Caregiver Support Services Research Articles

Community Services Supporting Family Caregivers for the Elderly: Lessons from the Comparison between Korea and the United States

The purpose of this study is to provide useful insights into community-level support services for family caregivers in Korea by comparing them with the services in the United States. Similar to most developed countries, life expectancy has led to rapid population aging in Korea over the last several decades. However, despite increased social needs of long-term care for the elderly, many elderly Koreans are still dependent on their family for the long-term care. Yet, existing support programs for family caregivers are very limited. As a result, family caregivers often suffer from a lack of financial resources and emotional support. In this study, we comprehensively review the extensive literature, including relevant studies and documents of communitylevel support services for family caregivers of the elderly at home in Korea and the United States. One of the most important differences is that compared to Korea, diverse services based on the law of NFCSP to support the family caregivers, such as counseling, organization of support group, and educating have been available in the United States since 2000. Additionally, the legal definition of family caregivers in the United State is broader than that in Korea, where family caregivers are limited to those who are related by blood or marriage. Therefore, more caregivers are eligible for support programs and benefit from the programs in the United States. The findings of the study suggest that policy makers in Korea should legislate for diverse and comprehensive services for family caregivers. Further, it is necessary to define legal terms for family caregivers more broadly to extend beneficiaries of the programs.

ICT as a Social Support Mechanism for Family Caregivers of People with Chronic Illness: a Case Study

Introducción: el apoyo social respaldado por las enfermeras como una estrategia para los cuidadores de familia es un fenómeno que aunque viene de tiempo atrás, en la actualidad tiene el reto de promover el cuidado a través de las redes sociales en línea. Objetivo: describir y analizar el uso de las tecnologías de información y comunicación (TIC) como un mecanismo de apoyo social para los cuidadores familiares de pacientes con enfermedades crónicas. Diseño: el método que se utilizó fue un estudio exploratorio descriptivo con un enfoque cualitativo que se llevó a cabo en Bogotá en el año 2010. El estudio de caso incluyó a veinte cuidadores de familia de pacientes con enfermedades crónicas y que usaron un blog. Con base en el modelo teórico de Rodger, se creó la estrategia de TIC “Difusión de innovaciones” en tres fases: 1) Diseño del blog de manera que permita las interacciones a través del chat, foros y consulta por correo electrónico. 2) Implementación de la estrategia durante cuatro meses con un servicio de apoyo del cuidador de dieciséis horas al día. La información se obtuvo por medio de diarios de campo y una entrevista final. 3) Análisis de la información para describir de qué modo perciben los cuidadores el apoyo social que se obtiene a través del uso del blog. Resultados: los resultados describen la forma en la que ellos perciben sus habilidades tecnológicas y su capacidad para usar el blog. Las principales categorías que se encontraron fueron cuidado, interacción, experiencia y tecnología. Discusión: los resultados se compararon con los de los informes de apoyo social que abordan el aprendizaje virtual para la salud y perspectivas teóricas sobre el apoyo social en línea.

Older family carers in rural areas: experiences from using caregiver support services based on Information and Communication Technology (ICT).

The aim of this intervention study was to illuminate the meaning of ICT-based caregiver support as experienced by older family carers living in vast rural areas, caring for a spouse at home. In order to access, the support service participants were provided with a computer and high speed Internet in their homes. Semi structured webcam-interviews were carried out with 31 family carers. A strategy for webcam interviewing was developed to ensure quality and create a comfortable interview situation for the family carers. Interviews were analysed using content analyses, resulting in the themes: Adopting new technology with help from others and Regaining social inclusion. The results indicate that ICT-based support can be valuable for older family carers in rural areas as it contributes to improve quality in daily life in a number of ways. In order to fully experience the benefits, family carers need to be frequent users of the provided support. Adequate training and encouragement from others were essential in motivating family carers to use the support service. Access to Internet and webcamera contributed to reducing loneliness and isolation, strengthening relationships with relatives living far away and enabled access to services no longer available in the area. Use of the ICT-service had a positive influence on the relationship between the older carer and adult grandchildren. It also contributed to carer competence and promote feelings of regaining independence and a societal role.

Telephone-delivered psychoeducational intervention for Hong Kong Chinese dementia caregivers: a single-blinded randomized controlled trial

PurposeMany family caregivers of persons with dementia (PWD) are unable to participate in community center-based caregiver support services because of logistical constraints. This study evaluated the effectiveness of a telephone-delivered psychoeducational intervention for family caregivers of PWD in alleviating caregiver burden and enhancing caregiving self-efficacy.Subjects and methodsIn a single-blinded randomized controlled trial, 38 family caregivers of PWD were randomly allocated into an intervention group or a control group. The intervention group received psychoeducation from a registered social worker over the phone for 12 sessions. Caregivers in the control group were given a DVD containing educational information about dementia caregiving. Outcomes of the intervention were measured by the Chinese versions of the Zarit Burden Interview and the Revised Scale for Caregiving Self-efficacy. Mann–Whitney U tests were used to compare the differences between the intervention and control groups.ResultsThe level of burden of caregivers in the intervention group reduced significantly compared with caregivers in the control group. Caregivers in the intervention group also reported significantly more gain in self-efficacy in obtaining respite than the control group.ConclusionA structured telephone intervention can benefit dementia caregivers in terms of self-efficacy and caregiving burden. The limitations of the research and recommendations for intervention are discussed.

The impact of sociodemographic factors on the utilisation of support services for family caregivers of elderly dependents - results from the German sample of the EUROFAMCARE study.

Objectives: As in nearly all European countries, demographic developments in Germany have led to both a relative and an absolute increase in the country’s elderly population. The care and support needed by these people is primarily provided by relatives or friends and close acquaintances within the home environment. The major challenges for society are to sustain, promote and support these informal resources. In order to achieve this, it is crucial that family caregivers are provided with situation-specific services that support them and relieve their burden of care. The major challenges for society are therefore to sustain, promote and support informal resources and to provide the opportunity for the use of services aimed at assisting and relieving the burden of family caregivers.Methods: In the context of the EUROFAMCARE study, 1,003 family caregivers from Germany were interviewed at home about their experiences using a standardized questionnaire. Included in the study were primary caregivers providing at least four hours of personal care or support per week to a relative aged 65 years or older. Subjects solely providing financial support were excluded. In this paper, a linear regression analysis has been conducted to analyse impact of sociodemographic factors on the utilisation of support services.Results: The family caregivers were 54 years on average (SD=13.4), 76% of them were female. The dependent elderly were 80 years on average (SD=8.3), and 69% of them were women. 60% of them were receiving long-term care insurance benefits. Use of support services aimed directly at family caregivers is very low. After including certain services aimed primarily at those in need of care but also often serving as a source of relief for family caregivers, the percentage of caregivers using support services increased slightly. Among sociodemographic characteristics, caregivers’ gender and education level have the greatest influence on services use. Other influential factors are caregivers’ perception of their caregiving burden and their assessment of the dependent family member’s need for assistance and support.

Support services for informal caregivers of community- dwelling frail elderly: a systematic review

The International Journal of Integrated Care (IJIC) is an online, open-access, peer-reviewed scientific journal that publishes original articles in the field of integrated care on a continuous basis.IJIC has an Impact Factor of 5.120 (2020 JCR, received in June 2021)The IJIC 20th Anniversary Issue was published in 2021.

Experiences of caregivers of people with Parkinson’s disease in Singapore: a qualitative analysis

To conduct an in-depth qualitative examination of the experiences of Singaporean people caring for those with Parkinson's disease (PD). The need to provide care for people with PD will increase with the extended life expectancy of Singaporeans. Caring for people with PD in their own homes for as long as possible is argued to provide psychosocial benefits as well as benefiting the community by delayed institutionalisation and reduced healthcare costs. This study reports the qualitative exploratory component of a large mixed method sequential explanatory design. Caregivers were selected through a purposive sampling technique and stratified based on the Hoehn and Yahr disease staging. Twenty-one semi-structured interviews were conducted in the home setting. Interviews were audio-taped and transcribed verbatim. The qualitative data were analysed using Ritchie and Spencer's framework method of qualitative analysis (1994, Analyzing Qualitative Data, Routledge, London). Seventeen (81%) caregivers were women, and their ages ranged from 31 years to more than 71 years. The length of the interview ranged from 42-106 minutes. The interview transcriptions produced 1731 free nodes, and after careful scrutiny for redundancy, 11 sub-themes were identified, which were organised into four key themes. These themes pertained to: (1) Coping and adaptation, (2) Challenges of caregiving, (3) Effects of caregiving on the caregivers and the (4) Need for better caregiver support. The results of this study have provided insights into the coping and well-being of caregivers of people with PD. The progressive nature of PD placed a significant burden on caregivers' emotional well-being. The findings of this study underscore the need for formal caregiver support and education to reduce strain in caregivers targeted at every stage of PD as there is no clear pattern of disease progression. This study has provided important findings that will inform the construction of interventional strategies to reduce caregiver burden and the provision of better support services for caregivers.

Male caregiving in dementia: A review and commentary

In this paper we present a review of the literature on men caring for a relative with dementia. While there is an abundance of literature on caregiving in general, there is a dearth of information on male caregiving and in particular on the role of sons as carers. Keywords used were dementia, Alzheimer's disease, caregiver, caregiver burden, caregiver support, sons, spouses, husbands, men, fathers, male, widowers, help seeking behaviour, parent child relations, gender identity and combinations of these. The inclusion criteria stipulated that papers had to be research based, written in English, published between the years 1999 and 2010 and related to men caring for a person with dementia. The categories that emerged from the literature included men in a caregiving role, gender differences in caregiver burden, support services and sons as carers. Further research is needed to highlight the needs and experiences of men in a caregiving role.

Supporting Bone Marrow Transplant Caregivers: Nursing'S influence on incorporating Caregiver Support Services into the Design of a New Bone Marrow Transplant Unit

During the planning stages of the new North Carolina Cancer Hospital (NCCH), nursing was solicited for their design input. The Bone Marrow Transplant Unit (BMTU) staff nurses at the University of North Carolina Healthcare recognized the opportunity to address some stressors that transplant caregivers may face. Nursing staff used this opportunity to incorporate caregiver support services into the design of the new, larger facility. In an effort to decrease transplant caregiver burden, several amenities for caregivers were created.

Complementary therapy and support services for formal and informal caregivers in Italian palliative care hospices: an exploratory and descriptive study

The present study is aimed to assess the availability and use of complementary medicine (CM) therapies in Italian palliative care hospices, and the support services available to caregivers and hospice staff. A national sample of 30 hospices meeting study criteria provided data by means of telephone interviews. All hospices offered spiritual assistance and at least one other form of CM, with the most common being massage therapy (n = 24) and relaxation therapy (n = 10). When offered complementary therapies, 65% or more of the patients accepted them. Twenty-nine hospices provided spiritual and psychological support to caregivers during patient stays, but only 12 offered support at home. All hospices offered support services to their staff, both in individual and group formats. Despite limited empirical support, CM has become an important part of palliative care for end-of-life patients in Italy, as in many other countries.

Family caregivers' support needs after brain injury: A synthesis of perspectives from caregivers, programs, and researchers

There is a dearth of support for family members who assume caregiving responsibilities following acquired brain injury (ABI). This qualitative study broadens the understanding of ABI caregiver support needs through data triangulation from multiple interview sources across different settings. Thirty-nine caregivers across urban and rural settings in Ontario participated in focus groups. Interviews focused on ABI support services received, their utility, access barriers, needed supports, and suggestions for service delivery. Key informant interviews were also held with four US researchers funded through the TBI Model Systems, one Canadian provincial government health official, and representatives from 11 Ontario ABI programs including two brain injury associations. Interviews focused on existing or proposed caregiver programs and gaps in services. A coding framework was developed through content analysis, centring on five themes: coping, supports that worked, supports needed, barriers, and ideal world recommendations. Perspectives from those involved in receiving, providing and researching caregiver interventions following ABI were synthesized to provide a thorough, detailed depiction of the ongoing support needs of caregivers. This convergence of evidence underscores that caregiver support needs transcend geographical boundaries and must be comprehensive, accessible, long-term, and encompass education, emotional, and instrumental support. Recommendations for ABI caregiver support services are offered.

Caregiver Support Service Needs for Patients With Mild Cognitive Impairment and Alzheimer Disease

Little is known about the service needs for persons caring for individuals with mild cognitive impairment (MCI). In this study, the level of support service need for caregivers of individuals diagnosed with Alzheimer disease (AD; N=55) and MCI (N=25) was compared with normal controls (N=44). Study partners (ie, caregivers) completed questionnaires about their service needs and participants' neurobehavioral symptoms, functional abilities, and frailty. Total, social, and mental health service needs were significantly different among the 3 groups (P<0.0001), with MCI and AD caregivers reporting more need for services as compared with the normal control group. There was no significant difference between MCI and AD groups for total and social service need. In the MCI group, caregiver's service need was related to neurobehavioral symptoms and frailty, whereas service need among the AD caregivers was related to functional disability and frailty. Caregivers of individuals with MCI are already experiencing a need for increased services comparable to that of individuals caring for AD patients, though the pattern of patient-related factors is different between the 2 patient groups. These findings suggest possible areas of intervention that could be considered at the earliest stages of memory loss.

Internet-Based Caregiver Support for Chinese Canadians Taking Care of a Family Member with Alzheimer Disease and Related Dementia

ABSTRACTThe aim of this study was to assess the usability of a new Internet-based Caregiver Support Service (ICSS) and evaluate its effects on health outcomes of Chinese Canadians who cared for a family member with dementia. Demographic and questionnaire data were collected from 28 participants, and in-depth interviews were conducted with 10 participants. Results showed that non-users reported higher levels of burden post-intervetion, and frequent users showed post-intervention reduction in experienced burden. Traditional beliefs shaped caregivers' needs; also, ethno-cultural-linguistic contexts affected system usability and were associated with usage behaviour. This study indicates that caregivers can benefit from receiving professional support via asynchronous e-mails and a dedicated information web site. The ICSS is a feasible approach for supporting caregivers who prefer an alternative service model. This emerging service requires more research in: enhanced technology design, service delivery models for immigrant caregivers, and evaluation of effectiveness and cost-effectiveness.

Community Dementia Care Management

Community Dementia Care Management

A pilot evaluation of the Family Caregiver Support Program

The purposes of this study were to evaluate a federal and state-funded Family Caregiver Support Program (FCSP) and explore what types of caregiver support service are associated with what caregiver outcomes. Information was obtained on a sample of 164 caregivers' use of eleven different types of support service. Descriptive and comparative analyses were used to detect the differences between users and nonusers of caregiver support services. Six measures included were caregiving appraisal scale, caregiving burden, caregiving mastery, caregiving satisfaction, hour of care, and service satisfaction. Using consulting and education services is associated with lessening of subjective burden; using financial support services is associated with more beneficial caregiver appraisal, such as better caregiver mastery. The findings are practical and helpful for future caregiver service and program development and evaluation and policy making for supporting caregivers. In addition, the evaluation method demonstrated in the study provided a simple and moderately effective method for service agencies which would like to evaluate their family caregiver support services.

Support for family caregivers: what do service providers say about accessibility, availability and affordability of services?

This paper reports on a survey of providers of caregiver support services in Singapore (N = 36). The overall aim of the survey was to provide feedback to service planners and programme staff on the delivery of services to caregivers and opportunities for improvement. A questionnaire, comprising both closed and open-ended questions, was used to collect data. The results showed that most health and social service providers offer counselling, case management, caregiver assessment, financial assistance and information. A minority provide emergency, short-stay respite care and day care. About one in three provide transportation services, which featured as a barrier to service utilisation. Other barriers identified were time commitments, lack of awareness of services, cost of care, caregivers' sense of responsibility, lack of alternate care arrangements and distrust. The survey also characterises the hard-to-reach caregivers as homebound, illiterate, socially shy and isolated, of low income and poorly educated. Most service providers emphasise that financial support is necessary in order to improve the prospects of family caregivers.

Racial and Ethnic Variations in Caregiver Service Use

This article examines whether race and ethnicity contribute to the differential use of caregiver support services, when controlling for caregiver and care recipient characteristics, as represented by predisposing, enabling, and need factors included in the Behavioral Model of Health Services Use. The study includes 1,508 individuals who provide care to an ill or disabled adult aged 50 or older, identified through a random digit dial telephone survey of California households. Logistic regression analysis is utilized to examine factors that predict use of caregiver support services. Race and ethnicity do not contribute significantly to caregiver service utilization, when controlling for relevant covarying factors such as age, education, emotional support, family contribution, care recipient service use, and care recipient impairment. A significant interaction exists between ethnicity and family closeness, with reduced rates of service use among Asian and Pacific Island caregivers whose families are brought closer by the caregiving experience. These findings suggest that racial and ethnic disparities in caregiver service use found at the bivariate level are attributable to covarying predisposing, enabling, and need factors. Further research and theoretical development are suggested to clarify the impact of sociocultural factors on caregiver service use.

Assistance Received by Employed Caregivers and Their Care Recipients: Who Helps Care Recipients When Caregivers Work Full Time?

This study examined the association among caregiver labor force participation, employees' caregiving activities, and the amount and quality of care received by care recipients. Telephone interviews were conducted with 478 adults who were employed full time and 705 nonemployed adults who provided care to a family member or friend aged 50 or older, identified through random sampling of California households. We assessed care recipient impairment and service problems; the amounts and types of assistance received from caregivers, family and friends, and paid providers; and caregiver utilization of support services. Care recipients of caregivers employed full time were less likely to receive large amounts of care from their caregivers, more likely to receive personal care from paid care providers, more likely to use community services, and more likely to experience service problems than were care recipients of nonemployed caregivers. Employed caregivers were more likely to use caregiver support services than were nonemployed caregivers. Accommodation to caregiver full-time employment involves selective supplementation by caregivers and their care recipients, reflecting increased reliance on formal support services as well as increased vulnerability to service problems and unmet care recipient needs. These findings suggest the need for greater attention to the well-being of disabled elders whose caregivers are employed full time.

Preliminary Experiences of the States in Implementing the National Family Caregiver Support Program

Despite increased attention to policy choices to support family and informal caregivers, relatively little is known about states' experiences in providing caregiver support services. This article reports on the first nationwide survey of all 50 states and the District of Columbia in providing caregiver services since the passage of the National Family Caregiver Support Program. State program administrators reported that their program differs from other home and community-based services because of the explicit focus on the family or informal caregiver. Results suggest that despite an increasing availability of caregiver supports in all 50 states, there is also a great unevenness in services and service options for family caregivers across the states and within states.

Cultural Attitudes and Caregiver Service Use

Focus groups were conducted with caregivers from eight racial-specific or ethnic-specific populations (African Americans, Chinese, Filipinos, Hispanics, Koreans, Native Americans, Russians, and Vietnamese), to examine cultural variations in caregiving experiences, care-related values and beliefs, care practices, and factors contributing to decisions about the use of caregiver support services. Analysis of focus group transcripts revealed three cross-cutting constructs: familism, group identity, and attitudinal and structural barriers to service use. We discuss these findings in terms of their implications for existing knowledge regarding family responsibility, resource utilization, and program development for racially and ethnically diverse family caregivers.