Formal Community Services Research Articles

Conceptualizing Family Caregivers' Use of Community Support Services: A Scoping Review.

Only a fraction of the 53 million caregivers in the United States use available formal community services. This scoping review synthesized the literature on the barriers and facilitators of community support service utilization by adult caregivers of a family member or friend with an illness, disability, or other limitation. We searched PubMed, CINAHL, PsycInfo, and Web of Science for quantitative and qualitative articles assessing barriers and facilitators of caregivers' access to and utilization of resources, following Preferred Reporting Items for Systematic Review and Meta-Analysis scoping review guidelines. Thematic analysis, drawing on an initial conceptualization, informed key insights around caregivers' resource navigation process. The review provides support for individual factors affecting service use. Notably, some factors-such as time restrictions and increased caregiving demands-appear to function as barriers to accessing services even as they increase caregivers' need for support. Additionally, contextual barriers including cultural factors and support of friends/family can affect caregivers' access to resources. Finally, experience with health systems and structures and the intersection with other factors can affect service utilization. Suboptimal access to and utilization of community support services can be addressed at both the person and system level to mitigate potential inequities. Ensuring that caregivers are aware of, eligible for, and have the capacity and support to access the appropriate resources at the right time is essential for improving caregiver outcomes, reducing burnout, and supporting continued care.

Social support and loneliness among frail older adults attending daycare centers: A multicultural study in Israel

AimsTo examine the link between intensity of use of formal support and loneliness among older adults, controlling for family support and covariates; and examine the moderating effect of contact frequency with family on this relationship. MethodsCross-sectional data were collected from September 2016 - April 2017 through structured interviews with 360 older adults attending adult day care centers (ADCCs) and representing three different ethnic groups in Israel. Loneliness was assessed by the UCLA Loneliness Scale. Hierarchical regression was applied to the study variables with loneliness scores as dependent variable, and bootstrapping with resampling strategies tested a moderating effect. ResultsLoneliness was linked negatively with contact frequency with the family network, frequency of ADCC attendance, and greater involvement in social activities at the ADCC. Significant negative correlation between ADCC attendance frequency and loneliness occurred only when family contact was at low-to-average frequency, but not in cases of high-contact frequency. ConclusionsFrequent use of ADCCs emerged as a significant contributor beyond the contribution of family support for reducing loneliness in older age, particularly for those with insufficient family contact. Service providers should improve the accessibility and availability of formal community services for the older population.

Supporting sexual assault survivors with disabilities: Tracing disclosure and referral pathways to postassault health care services.

National epidemiological data indicate that nearly 4 in 10 victims of recent sexual assaults have physical, cognitive/developmental, or mental health disabilities, which can make navigating postassault help seeking more challenging. To streamline services, many communities have created sexual assault nurse examiner (SANE) programs for comprehensive health care, crisis intervention, medical forensic evidence collection, victim advocacy, and legal referrals. SANE programs are recommended as the national best practice for postassault care, but there is virtually no U.S.-based research on whether survivors with disabilities seek these services. The present study sought to identify the disclosure and referral pathways that successfully connected sexual assault survivors with disabilities to SANE programs for postassault care. Forensic nurses in one midwestern state recorded information about all adult sexual assault patients (N = 755) who sought care during a 9-month window of data collection. Survivors with disabilities were significantly less likely than those who did not have disabilities to disclose to informal support providers (e.g., family, friends) and those individuals were unlikely to suggest to survivors with disabilities that they seek postassault health care. Survivors with disabilities were significantly more likely than survivors who did not have disabilities to disclose to formal help sources and to be referred to SANE programs by other formal community services, typically the police. A strong referral network from law enforcement to SANE programs is important, but survivors who do not wish to pursue criminal investigation need reliable pathways to postassault health care. Strategies for promoting community awareness of SANE services are discussed. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

WHOM DO WE SERVE? DIVERSITY OF OLDER COMMUNITY CARE RECIPIENTS’ FUNCTIONING ACROSS EUROPE

Across Europe, an increasing number of older people with multiple health and social care needs stay in their own homes until old age. Community care aims to support them to live at home for as long as possible. Comparative studies showed that population characteristics of older community care recipients differ between European countries. This is due to differences in financing, delivery and governance of community care. However, little is known about differences in health, including physical, cognitive, mental and social functioning, of older community care recipients served across European countries. The aim of this study was to provide insight into these differences. We used data of the IBenC study, which was collected using the interRAI HC-Assessment among 2884 older community care recipients from six European countries: Belgium, Finland, Germany, Iceland, Italy and the Netherlands. We found that prevalences of impairments in different health domains were highest among Italian community care recipients followed by the Belgian population, and lowest among community care recipients from the Netherlands. Feelings of loneliness were lowest among the Italian and highest among the Dutch population. This variation between European countries may be explained by differences in eligibility for and access to formal community services and informal care provision as well as cultural diversity. Insight in these differences supports understanding of community care across Europe among European and national policy-makers and researchers.

LTC SERVICE UTILIZATION IN ASIAN COUNTRIES: THEORY, PRACTICE AND OUTCOMES

In Asia, provision of LTC care services for elderly is fast emerging with fragmented integration of western approaches to delivering continuum of care services. Limited knowledge exists on utilization or effectiveness of LTC services that incorporate theory to determine service outcomes. In this symposium, presenters will share findings on service utilization from Taiwan, Hong Kong and India. Woven into their discussion is theoretical framework to evaluate service utilization and outcomes using primary data from LTC providers and clients. Liou will discuss findings from interviews (41 staff and 26 clients) in Adult Day Services Centers in Taiwan using the competing values framework of organizational culture for LTC, highlight staff-clients relationship based on clan versus hierarchical culture, and the importance of “didactic relationship’ for positive services outcome for clients. Lu, and colleagues will examine key social determinants of life satisfaction among elders who live alone in urban China using data from 862 older respondents and discuss why social participation; family relationship and preference of living arrangement are considered important protective factors of life satisfaction than dependency on formal community services, and offer ways to improve services for single elders with compromised IADLs and ADLS. Balaswamy will present findings from interviews with 187 residents in Old Age Homes (OAH) in India framed within the Andersen model. She will share the challenges residents have in accessing health care services, enabling factors of service use, affordability to health care which is a primary dilemma for all residents and recommendations for designing and improving LTC services.

Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study.

Background/AimsDespite reporting high levels of burden, supporters of people with young onset dementia (YOD) underuse formal community services. Previous quantitative studies in YOD are of limited utility in guiding service design because they did not consider important contextual barriers to service use. The aim of this study was to identify all relevant barriers and describe the service features considered most important to improving uptake by people with YOD and their supporters.MethodsEighty-six people with consensus-confirmed YOD (mean onset age 55.3 years) and/or their primary supporter participated in quantitative interviews, and 50 also participated in one of seven qualitative focus groups. Interview participants reported levels of community service use and reasons for non-use, functional impairment, behavioural and psychological symptoms, supporter burden, social network, and informal care provision. Focus group participants expanded on reasons for non-use and aspects of an ideal service.ResultsAlthough at least one community service was recommended to most participants (96.8%), 66.7% chose not to use one or more of these. Few of the clinical or demographic factors included here were related to service use. Qualitative analyses identified that lack of perceived need, availability, and YOD-specific barriers (including ineligibility, unaffordability, lack of security, lack of childcare) were commonly reported. Five aspects of an ideal service were noted: unique, flexibile, affordable, tailored, and promoting meaningful engagement.ConclusionPeople with YOD and their families report that formal community services do not meet their personal and psychological needs. Researchers can provide ongoing assessment of program feasibility, suitability, and generalisability.

Is use of formal community services by older women related to changes in their informal care arrangements?

ABSTRACTThis paper examines how the relationships between the factors (predisposing, enabling and illness) of the 1973 Andersen framework and service use are influenced by changes in the caring role in older women of the 1921–26 cohort of the Australian Longitudinal Study on Women's Health. Outcome variables were the use of three formal community support services: (a) nursing or community health services, (b) home-making services and (c) home maintenance services. Predictor variables were survey wave and the following carer characteristics: level of education, country of birth, age, area of residence, ability to manage on income, need for care, sleep difficulty and changes in caring role. Carer changes were a significant predictor of formal service use. Their inclusion did not attenuate the relationship between the Andersen framework factors and service use, but instead provided a more complete representation of carers' situations. Women were more likely to have used support services if they had changed into or out of co-resident caring or continued to provide co-resident care for a frail, ill or disabled person, needed care themselves, and reported sleep difficulties compared with women who did not provide care. These findings are important because they indicate that support services are particularly relevant to women who are changing their caring role and who are themselves in need of care.

Translation and adaption of the interRAI suite to local requirements in Belgian hospitals

BackgroundThe interRAI Suite contains comprehensive geriatric assessment tools designed for various healthcare settings. Although each instrument is developed for a particular population, together they form an integrated health evaluation system. The interRAI Acute Care Minimum Data Set (interRAI AC) is tailored for hospitalized older persons. Our aim in this study was to translate and adapt the interRAI AC to the Belgian hospital context, where it can be used together with the interRAI Home Care (HC) and the interRAI Long Term Care Facility (LTCF).MethodsA systematic, comprehensive, and rigorous 10-step approach was used to adapt the interRAI AC to local requirements. After linguistic translation by an official translator, five researchers assessed the translation for appropriate hospital jargon. Three researchers double-checked for translation accuracy and proposed additional items. A provisional version was converted into the three official languages of Belgium—Flemish, French, and German. Next, a multidisciplinary panel of nine experts judged item relevance to the Belgian care context and advised which country-specific items should be added. After these suggestions were incorporated into the interRAI AC, hospital staff from nine Flemish hospitals field-tested the tool in their practice. After evaluating field-test results, we compared the interRAI AC with Belgian versions of the interRAI HC and interRAI LTCF. Next, the Flemish, French, and German versions of the Belgian interRAI portfolio were harmonized. Finally, we submitted the Belgian interRAI AC to the interRAI organization for ratification.ResultsEighteen administrative items of the interRAI AC were adapted to the Belgian healthcare context (e.g., usual residence, formal community services prior to admission). Fourteen items assessing the ‘informal caregiver’, and 17 items, including country-specific items, were added (e.g., advanced directive for euthanasia).ConclusionsThe interRAI AC was adapted to local requirements using a meticulous and recursive 10-step approach. As use of the interRAI Suite continues to grow worldwide and as it continues to expand to other care settings and populations, this procedure can guide future translations. This procedure might also be used by others facing similar challenges of complex translation and adaptation situations, where multidimensional instruments are used across multiple care settings in multiple languages.

Problems and Unmet Needs of Patients Discharged “Home to Self-Care”

The purpose of this study was to determine the extent to which patients discharged "home to self care" experienced problems and unmet needs. A secondary aim was to explore potential differences in problems and unmet needs between medical and surgical patients. The study setting was acute care in 2 hospitals that were part of a large academic medical center in the Midwest. The prospective, cohort survey study was designed with a systematic sampling strategy to identify 130 cognitively intact adults hospitalized for either medical or surgical reasons who planned to return home after discharge without formal community services. The hospital information system was checked daily to verify whether dispositions were coded "home to self care," and to verify whether the patients were not seen by a discharge planner. The Problems After Discharge Questionnaire-English Version (PADQ-E) was then either mailed or administered via a phone interview approximately 1 week after discharge. Overall, 73.8% wanted more information about one or more topics related to their care. Most frequently mentioned were "when they would be completely recovered" (38.0%) and "where and how they could get nursing care at home if they needed it" (36.9%). A majority (91.8%) reported difficulties related to at least 1 physical complaint. Pain was most frequently mentioned by surgical patients (88.1%). Getting tired quickly was an issue for both surgical (76.2%) and medical patients (62.8%). More than 85% received help at home from family or friends. Surgical patients received significantly more assistance than medical patients with personal care, household activities, and mobility. Approximately 1 in 4 surgical patients reported an unmet need within the Physical Complaints subscale on the PADQ-E. Potential problems that may occur after discharge have little chance of getting addressed if not identified during the discharge planning process. Standardized, early screening to accurately identify patients at risk for unmet needs after discharge is critical to the development and implementation of a quality discharge plan. The lack of time available to hospital clinicians to assemble and interpret extensive and complex information calls for improved methods to support identifying patients at risk for poor outcomes, engaging discharge planners efficiently and accurately, providing a standardized assessment to identify and address continuing care needs, and identifying patients who would benefit from post-acute care. Case managers advance their practice by advocating for and participating in the development of improved methods.

Use of community support services by middle-aged and older patients with psychotic disorders.

The study sought to determine the degree to which use of community services is related to predisposing, enabling, and need factors among older patients with psychotic disorders who live in the community and to assess whether high use of community services is associated with improving or declining psychopathology. The sample consisted of 89 middle-aged and elderly community-dwelling patients with schizophrenia or other psychotic disorders. Assessments at baseline and two follow-ups at six-month intervals included measures of psychopathology, well-being, and social adjustment, in addition to the frequency of use of 17 formal community services in three categories-psychological, social, and daily living services. Ninety-two percent of patients reported use of community support services. The mean number of annual service contacts per patient was 36.6 for psychological services, 81 for social services, and 39.7 for daily living services. High users of psychological services were younger and experienced more severe positive psychotic symptoms and depressive symptoms. High users of social services were of higher socioeconomic status, more likely to be female, and had a longer history of psychosis, more cognitive deficits, and more severe negative psychotic and depressive symptoms. Patients who used daily living services were older, had poorer functional health status and more cognitive deficits, and had more severe negative psychotic and depressive symptoms. A trend was noted for high users of social services to experience relief from depressive symptoms over time. Use of community services is common among older outpatients with psychotic disorders, but its frequency varies as a function of patient characteristics.

Sources and Determinants of Social Support for Caregivers of Persons with AIDS

This study examines the determinants of social support among a sample of 642 caregivers of persons with AIDS living in San Francisco and Los Angeles. Respondents include both traditional family caregivers (mothers, spouses, other relatives) and non-traditional caregivers (friends, homosexual partners). Multiple regression analyses are conducted to assess the independent effects of six sets of variables on emotional and instrumental support: social-structural factors (age, education, employment status), caregiver's relationship to the person with AIDS, situational variables (caregiver's HIV status, patient's functional disability, interpersonal conflict), social network factors (contact with family, contact with friends, community integration), personal resources (mastery, caregiving competence), and use of formal community services (patient-directed services, caregiver-directed services). A number of factors and conditions appear to be relevant for caregiver support. For example, results indicate that network factors, including frequency of contact, conflict, and community integration, are importantly related to caregivers' perceptions of emotional support. There is also a trend suggesting lower emotional support among traditional family caregivers, relative to nonfamily caregivers, within gender categories. With respect to instrumental assistance with caregiving, factors that place greater demands and time constraints on caregivers, such as being employed and caring for an AIDS patient with greater functional limitations, appear to increase the level of informal instrumental support the caregiver receives. Partners and spouses, however, receive significantly lower instrumental assistance, independent of other factors. Implications of the findings are discussed.

Cost of community care for older people.

There has been no published study that considers actual costs in a representative sample of people aged > or = 65 years. The present study describes the financial costs of formal community services for elderly people with dementia, depression, anxiety disorder or physical disability. Psychiatric morbidity, physical disability and services received were assessed by standardised questionnaire in randomly selected Islington enumeration districts. Subjects were interviewed at home (n = 700). Dementia was the most expensive disorder per sufferer in terms of formal services. Those with depression were also high users of health services. Despite presenting to health services, 90% were not treated with appropriate drugs. In contrast, social services were received by people who were activity-limited or with dementia. The highest service cost for the population as a whole was for the physically disabled. In multivariate analysis the significant predictors of high service costs were living alone, being physically ill, depression, dementia and increasing age. Failure to detect and treat depression and the anxiety disorders in older people, despite their presentation to medical services, may have major economic consequences as well as contributing to individual suffering.

Racial differences in family support and formal service utilization among older persons: a nonrecursive model.

This research examines the relationship between the utilization of family help with activities of daily living and the use of formal community services among elderly persons for both Blacks and Whites. The analysis tests a nonrecursive model proposing a reciprocal relationship between the use of family for help with ADL/IADL tasks and the utilization of services by race. Two contradictory hypotheses are tested: the "compensatory" or "substitution" hypothesis, which suggests a negative reciprocal relationship between the use of informal and formal support, and the "linking" hypothesis, which indicates a positive reciprocal relationship. A multivariate analysis of data from the 1984 Supplement on Aging tested these hypotheses. The results fully support the "substitution" hypothesis for older Whites, but only partially for older Blacks. Receiving formal services is not associated with lower use of informal supports among Blacks.

How Does Formal and Informal Community Care Affect Nursing Home Use?

We examined the effects of informal and formal community care on the 6-year risk of nursing home use in a representative sample of disabled elders. Increased risk was associated with receiving formal community services and with caregiver burnout. There was a modest reduction in risk of using a nursing home among those receiving greater amounts of informal care. Elders with male caregivers were at over twice the risk of using a nursing home than those with female caregivers, while those who lived with their primary caregiver were at reduced risk. Increasing amount of formal services was associated with reduced risk of nursing home use for cognitively impaired older persons. Formal community services did not buffer the effects of severity of disability on nursing home use. Supplementing informal services with formal care was associated with greater risk of using a nursing home. Future research should move beyond testing global hypotheses regarding the protective effects of informal and formal community care and examine the impact of specific types of community care for specific subgroups of older persons on subsequent nursing home use.

Family and Social Networks among Elderly Italians in Gippsland

This paper examines the importance of family and social networks among elderly Italians in Gippsland in South-Eastern Australia. Support received by respondents from kin was highly valued and was most frequently provided in the areas of advice, general information, emotional problems and episodes of minor illness. The strength of these networks was based on the preservation of a cultural pattern which places a high value on the role of the extended family. Despite the widespread provision of formal community services designed to meet the needs of the aged, differences in culture and language present barriers to the use of main stream community services for the elderly. A small group was identified who were socially isolated and potentially vulnerable due to absence of kin and lack of confidence in using English.

Social care: family and community support systems.

The growing number of elderly is bringing about dramatic changes in family life, in the nature and extent of interventions necessary to support an aging population, and in our notions about respective roles of family and community in providing for these needs. Although most older people manage independently with only the ordinary assistance family members provide each other, growing numbers of the oldest old and persons suffering from frailty and incapacity require more extensive social care. The term "social care" is often used synonymously with "formal community services," but the concept is broader, also encompassing informal family care. Social care is directed toward needs critical to independence: socialization and self-development, help in tasks of daily living, and assistance with personal care. At present, older people prefer that social care be provided within a family context, turning to formal community interventions only when families are unable to provide the required assistance. But given increases in numbers of working women, the restructuring of the family, and changing attitudes about the community's role as service provider, a more carefully articulated partnership between family and community will be required in the future.