scholarly journals SERVICE USE AND BARRIERS TO SERVICE ACCESS AMONG FAMILY CAREGIVERS IN RURAL APPALACHIA

2018 ◽  
Vol 2 (suppl_1) ◽  
pp. 868-868
Author(s):  
A S Vipperman ◽  
J Savla ◽  
Karen A Roberto ◽  
A Harris ◽  
E Hoyt ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Service Use ◽  
Service Access ◽  
Barriers To Service ◽  
Rural Appalachia

scholarly journals Dementia-Related Education and Support Service Availability, Accessibility, and Use in Rural Areas: Barriers and Solutions

2020 ◽  
Vol 39 (4) ◽  
pp. 545-585 ◽  
Author(s):  
Melanie Bayly ◽  
Debra Morgan ◽  
Amanda Froehlich Chow ◽  
Julie Kosteniuk ◽  
Valerie Elliot
Keyword(s):  
Scoping Review ◽  
Rural Areas ◽  
English Language ◽  
Service Use ◽  
Support Service ◽  
Service Access ◽  
Service Needs ◽  
Point Of Entry ◽  
Values And Beliefs ◽  
Barriers To Service

ABSTRACTThis scoping review mapped and synthesized published literature related to education and support services for individuals with dementia and their caregivers living rurally. Specifically, we investigated education and support service needs, availability and use of services, barriers to service access and use, and solutions to these barriers. Empirical, English-language articles (2,381) were identified within MEDLINE, CINAHL, PSYCINFO, and EMBASE. Articles were screened according to Arksey and O’Malley’s (2005) five-stage scoping review methodology and the recommendations of Levac et al. (2010). Findings suggest limited availability of rural dementia-related support and education services, particularly respite care and day programs. Service use varied across studies, with barriers including low knowledge regarding services, practicality, and resource issues (e.g., transportation, financial), values and beliefs, stigma, and negative perceptions of services. Solutions included tailored and person-centred services, technological service provision, accessibility assistance, inter-organization collaboration, education regarding services, and having a “point of entry” to service use.

scholarly journals Family Caregivers in Rural Appalachia Caring for Older Relatives with Dementia: Predictors of Service Use

2021 ◽  
Author(s):  
Jyoti Savla ◽  
Karen A Roberto ◽  
Rosemary Blieszner ◽  
Aubrey L Knight
Keyword(s):  
Family Caregivers ◽  
Support Services ◽  
Structural Equation ◽  
Service Use ◽  
Structural Equation Models ◽  
Behavioral Model ◽  
Community Dwelling ◽  
Personal Services ◽  
Formal Services ◽  
Rural Appalachia

Abstract Background and Objectives Residents of rural Appalachia tend to experience poorer health and greater economic distress than rural dwellers elsewhere in the U.S. Although family is the first line of support for older adults needing care, it is unclear whether dementia caregivers in Appalachia assume these care responsibilities because of strong informal networks that support them in their caregiving role, under-resourced formal services for persons with dementia, or culture-based reluctance to accept help from outsiders. This research examines how rural residents of Appalachia manage the care of relatives with dementia. Research Design and Methods The study was grounded in the Andersen Behavioral Model, supplemented with culturally-relevant variables. Family caregivers from rural Appalachian counties in Virginia caring for community-dwelling relatives with dementia participated in a structured phone interview (N = 163). Generalized structural equation models were estimated, with predisposing, need, and enabling variables as predictors. Use of support services (e.g., meal delivery) and personal services (e.g., home health nurse) by family caregivers to care for the person with dementia were the dependent variables, and caregiver’s rural community identity and attitude toward services were moderators. Results Approximately half the sample utilized at least one support service and one personal service. Predisposing and need factors predicted the use of support services, whereas predisposing, need, and enabling factors predicted personal services. Caregivers who strongly identified with their cultural roots were less likely to use personal services unless they held a generally positive view of formal services. Discussion and Implications Although the extent of needs and the caregiver's economic situation were essential influences on formal service utilization, the main drivers were the caregiver's identification with rural Appalachian culture and attitude toward services. Findings point to within-group heterogeneity that requires differential approaches to delivery of community-based services accounting for varying attitudes, preferences, and family resources.

scholarly journals COMBATTING LONELINESS: SERVICE USE AMONG RURAL FAMILY CAREGIVERS OF PERSONS WITH DEMENTIA

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S888-S888
Author(s):  
Emily K Hoyt ◽  
Karen A Roberto ◽  
Jyoti Savla
Keyword(s):  
Family Caregivers ◽  
Service Use ◽  
Well Being ◽  
Personal Care ◽  
Rural Caregivers ◽  
Rural Family ◽  
Emotional Loneliness ◽  
Formal Services ◽  
Rural Appalachia ◽  
Social Loneliness

Abstract According to a 2018 AARP study, 42% of unpaid caregivers experience loneliness. While findings across multiple studies suggest that caregivers experience loneliness either because they lack intimacy in close relationships (i.e., emotional loneliness) or they feel disconnected from their social network (i.e., social loneliness), little is known about how aspects of dementia caregiving influence loneliness, particularly among rural caregivers. The purpose of this study was to examine the association between in-home service use and caregivers experience with both types of loneliness. Eighty-eight co-residing dementia caregivers in rural Appalachia (Mean Age = 68 years; 91% White; 58% Spouses) completed telephone interviews that included questions about their use of formal services and perceptions of emotional and social loneliness. More than half (58%) of the caregivers accessed 1 to 4 formal services. Regression models revealed that caregivers who experienced greater social loneliness were more likely to access personal care services (p=0.013) and respite services (p=0.004) compared to caregivers who experienced less social loneliness. Further, caregivers who experienced greater emotional loneliness were also more likely to access personal care (p=0.028) and respite (p=0.039) services compared to caregivers who experienced lower emotional loneliness. These associations remained robust even after controlling for relationship to the PwD (spouse vs. non-spouse). Findings suggest that beyond assisting with the care of the PwD, the use of formal services may help family caregivers manage loneliness and relieve social isolation. Discussion will focus on the importance of service accessibility and use for the health and psychological well-being of rural family caregivers.

scholarly journals When the Day Goes Awry: Families Caring for Persons With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 638-639
Author(s):  
Karen Roberto ◽  
Jyoti Savla ◽  
Steven Zarit
Keyword(s):  
Family Caregivers ◽  
Rural Areas ◽  
Service Use ◽  
Management Strategies ◽  
Care Quality ◽  
Future Research ◽  
Full Time ◽  
Daily Lives ◽  
Formal Service ◽  
Formal Services

Abstract The daily lives of family caregivers of persons with dementia (PwD) often require that they manage multiple competing demands in a context of unpredictability. Memory and behavior changes associated with dementia can cause PwD to act in random and irrational ways that create stress and influence all aspects of caregivers’ everyday life. Supportive others, including informal helpers and formal service professionals, should provide relief to primary caregivers; however, help may not alleviate caregiver stress and can sometimes compound the burden of care. This symposium draws on daily diary surveys and face-to-face interviews to focus on four aspects of managing everyday care of PwD among family caregivers in rural areas. Brandy Renee McCann explores how caregivers’ vigilance on behalf of PwD care quality interacts with service use. Karen Roberto examines the ways in which caregivers manage PwD resistance to help, including their use of forceful care strategies. Rosemary Blieszner focuses on competing caregiver roles and demands that may contribute to or alleviate caregiver stress. Tina Savla addresses the unexpected, and often hidden, challenges involved in using formal services. Collectively, the four presentations provide in-depth insight into the complicated daily lives of families coping with dementia and the ways in which they meet the demands of full-time caregiving under often difficult and challenging circumstances. Discussant Steve Zarit considers the efficacy of these management strategies for various aspects of everyday care and offers suggestions for future research and person-centered programs and interventions to reduce health disparities among caregivers in rural areas.

scholarly journals Corrigendum To: A GIS APPROACH TO IDENTIFYING SERVICE ACCESS DISPARITIES IN RURAL APPALACHIA

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
A Harris ◽  
T Savla ◽  
S Borowski ◽  
A Vipperman ◽  
Ka Roberto ◽  
...  
Keyword(s):  
Service Access ◽  
Rural Appalachia

scholarly journals Carers’ experiences of timely access to and use of dementia care services in eight European countries

2019 ◽  
pp. 1-18 ◽  
Author(s):  
Hannah Jelley ◽  
Liselot Kerpershoek ◽  
Frans Verhey ◽  
Claire Wolfs ◽  
Marjolein de Vugt ◽  
...  
Keyword(s):  
Service Use ◽  
Study Participant ◽  
Formal Care ◽  
Structured Interviews ◽  
Care Services ◽  
People With Dementia ◽  
Timely Access ◽  
Mixed Feelings ◽  
Barriers To Service ◽  
Person With Dementia

AbstractTimely access to care services is crucial to support people with dementia and their family carers to live well. Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Formal Care (Actifcare) study. Participant responses were summarised using content analysis, categorised into clusters and frequencies were calculated. Less than half of the participants (42.3%) reported service use. Of those using services, 72.8 per cent reported timely access and of those not using services 67.2 per cent were satisfied with this situation. However, substantial minorities either reported access at the wrong time (27.2%), or feeling dissatisfied or mixed feelings about not accessing services (32.8%). Reasons for not using services included use not necessary yet, the carer provided support or refusal. Reasons given for using services included changes in the condition of the person with dementia, the service's ability to meet individual needs, not coping or the opportunity to access services arose. Facilitators and barriers to service use included whether participants experienced supportive professionals, the speed of the process, whether the general practitioner was helpful, participant's own proactive attitude and the quality of information received. To achieve timely support, simplified pathways to use of formal care services are needed.

“There isn't an easy way of finding the help that's available.” Barriers and facilitators of service use among dementia family caregivers: a qualitative study

2017 ◽  
Vol 29 (5) ◽  
pp. 765-776 ◽  
Author(s):  
Ashley Macleod ◽  
Gemma Tatangelo ◽  
Marita McCabe ◽  
Emily You
Keyword(s):  
Family Caregivers ◽  
Service Use ◽  
Care Service ◽  
Aged Care ◽  
Community Dwelling ◽  
Barriers And Facilitators ◽  
Care Recipient ◽  
Structured Interviews ◽  
Good Communication ◽  
People With Dementia

ABSTRACTBackground:Family caregivers of people with dementia have significant unmet needs in regard to their caregiving role. Despite this, they are reluctant to utilize services to reduce their burden. The aim of this study was to examine the barriers and facilitators of service use among family caregivers of people with dementia.Method:Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analyzed using thematic analysis.Results:Six main barriers and three facilitators were identified. These barriers and facilitators were relevant across many types of services and supports. The barriers were: the inability to find information about relevant services or support, the poor quality or mistrust of the services, the inflexibility of services, caregivers’ beliefs about their obligations to the caregiving role and resistance by the care recipient. Key facilitators were: having good communication with the care recipient, having an “expert” point of contact, and having beliefs about the caregiving role that enabled the use of services.Conclusion:Given the significant changes in the aged care service-system, it is important to discuss the barriers faced by family caregivers of people with dementia. This will inform the development of targeted strategies to address the lack of service use among these family caregivers.

scholarly journals Caregiving During COVID-19: A Multi-State Qualitative Study of Family Caregiver Experiences and Decision Making

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 440-440
Author(s):  
Tonie Sadler ◽  
Kevin Yan ◽  
Daniel Brauner ◽  
Harold Pollack ◽  
R Tamara Konetzka
Keyword(s):  
Family Caregivers ◽  
Qualitative Interviews ◽  
Service Organizations ◽  
Service Access ◽  
Global Pandemic ◽  
Remote Healthcare ◽  
Caregiver Experiences ◽  
Healthcare Interventions ◽  
Services And Supports

Abstract COVID-19 poses unique challenges to family caregivers. This study explores how family caregivers for older adults with cognitive impairments experience and make decisions about caregiving during a global pandemic. Using purposive sampling, 63 family caregivers across eight states participated in open-ended qualitative interviews (2019-2020), until thematic saturation was reached. Questions broadly examined caregivers’ experiences and decisions, focusing on decisions made around type of care setting. Questions about responses to the Pandemic were added as events unfolded. States were selected to represent variation in Home and Community Based Service (HCBS) expenditures as a percentage of total Medicaid long-term services and supports expenditures. Family caregivers experienced significant concern about COVID-19 itself, and about the indirect consequences of caregiving caused by the pandemic. Caregivers also displayed flexibility and adaptability in ceasing selected services, contingently continuing services, and utilizing telemedicine and other remote healthcare interventions to protect their loved ones. Many family caregivers utilized remote health care tools such telemedicine, no-contact prescription and grocery delivery. Such measures improved service access and reduced caregiver workload. Given the persistent challenges posed by COVID-19, long-term service organizations have an opportunity to enhance their policies to meet the needs of caregivers and those they care for. There is a need to expand telemedicine and other remote healthcare tools, while adapting these technologies to the needs of families. Also, procedures are needed for safe pathways to utilize HCBS and nursing care during a pandemic including communication supports, sufficient PPE, increased staffing, and utilization of evidence-based protocols.

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