scholarly journals FEASIBILITY OF CARRES MODULES TO REDUCE POTENTIALLY AVOIDABLE HOSPITALIZATIONS IN PERSONS WITH COGNITIVE DEFICITS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S288-S288
Author(s):  
Victoria Steiner ◽  
Linda Pierce ◽  
Carol Bryan
Keyword(s):  
Family Caregivers ◽  
Cognitive Deficits ◽  
Family Caregiving ◽  
Hospital Readmissions ◽  
Well Being ◽  
Community Dwelling ◽  
Care Recipient ◽  
Wide Audience ◽  
Avoidable Hospitalizations ◽  
Care Recipients

Abstract Family caregiving is an essential, yet understudied, factor that can hasten, delay, or prevent hospital readmissions in individuals with cognitive deficits. This 3-month feasibility study examined 18 Internet-based educational CARREs (Communicate, Assist, Recognize & Report Events) Modules for family caregivers that address care recipients’ potentially avoidable hospitalization (PAH) conditions, e.g. UTI. This study determined: 1) caregivers’ perceptions about the use of the CARREs Modules, 2) caregivers’ self-reported value of the Modules, and 3) potential outcomes for caregivers and care recipients. Community-dwelling family caregivers were recruited from local support/education programs and assigned 6-8 Modules based on their care recipients’ needs. Links to online surveys were emailed at baseline, and 30 and 90 days post-enrollment. Descriptive statistics were performed on these data. Twenty potential subjects were screened but five were ineligible and three refused to participate. The remaining 12 subjects were primarily White females caring for a husband or parent. Subjects completed all the Modules they were assigned and did not experience any difficulties answering the survey questions. Subjects reported completing the Modules at least moderately increased their knowledge (67%), not being burdened by completing the Modules (67%), and very likely to participate again (58%). Many subjects stated the Modules taught them new things about preventing hospital readmissions in their care recipient (75%) and improved their well-being as a caregiver (83%). In collaboration with a home care agency, the investigators plan to implement and test a sustainable, “real-world” educational intervention incorporating the CARREs Modules that reaches a wide audience of family caregivers.

scholarly journals ACTIONS TAKEN BY STROKE FAMILY CAREGIVERS TO POTENTIALLY PREVENT SURVIVORS’ HOSPITAL READMISSIONS IN CHINA

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S288-S288
Author(s):  
Hairui Yu ◽  
Jennifer Perion ◽  
Victoria Steiner ◽  
Linda Pierce
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Hospital Readmissions ◽  
Structured Interview ◽  
Stroke Survivors ◽  
Physically Active ◽  
Face To Face ◽  
Care Recipients ◽  
Qualitative Descriptive ◽  
Male Caregivers

Abstract Stroke is a leading cause of death in China; its level of burden on the Chinese population is greater than the global average. Family caregiving plays an essential role in prevention and management of stroke. The purpose of this qualitative descriptive study was to identify actions family caregivers of stroke survivors in China take to prevent hospital readmissions. Using purposive sampling, adult family caregivers (n=10) were enrolled from Huai’an city in Jiangsu province who provided care for a survivor in community settings for six months or longer. Caregivers were asked questions in a face-to-face, semi-structured interview with content validity established by experts in the field. Audiotaped interviews were transcribed/translated into English and the narrative data analyzed using Colaizzi’s approach to content analysis. Seven female and three male caregivers with an average age of 55 years indicated actions that comprised six themes. These themes are: 1) Encouraging care recipients to be physically active, 2) Balancing a healthy diet with pleasurable foods, 3) Monitoring the physical health of care recipients and preventing injuries, 4) Developing personal and intimate strategies to motivate care recipients, 5) Providing emotional support and maintaining optimism, and 6) Gaining knowledge through relationships with doctors but desiring communication with other caregivers. Recognizing these actions taken by stroke family caregivers may improve education programs aimed at preventing hospital readmissions and be applicable throughout the world. Findings may also guide healthcare professionals who can advocate with Chinese local, provincial, and central health commissions on stroke survivors and their family caregivers’ behalf.

scholarly journals Family Caregiving for Persons With Emotional, Developmental, and Behavioral Disorders During COVID-19

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 451-452
Author(s):  
Scott Beach ◽  
Richard Schulz ◽  
Heidi Donovan ◽  
Ann-Marie Rosland ◽  
Tara Klinedinst ◽  
...  
Keyword(s):  
Behavioral Disorders ◽  
Family Caregiving ◽  
Online Survey ◽  
Well Being ◽  
Care Recipient ◽  
Cross Sectional ◽  
Health Crisis ◽  
Care Recipients ◽  
Negative Impacts ◽  
Cognitive Problems

Abstract COVID-19 has the potential to exacerbate stresses of family caregiving. While studies during COVID-19 have focused on caregivers of those with memory / cognitive issues like Alzheimer’s Disease, less attention has been paid to those caring for persons with emotional / developmental / behavioral disorders. This paper compares family caregivers of persons with emotional / developmental / behavioral disorders (EDB); physical conditions (PH); and memory / cognitive problems (MC) during the early phase of the pandemic. We focus on demographics, caregiving context, COVID-related caregiver stressors, and validated physical, psychosocial, and financial well-being outcomes. We conducted a cross-sectional national online survey during April-May, 2020 (n = 556). The sample included 274 PH (50%), 141 MC (25%), and 141 EDB (25%) caregivers. EDB caregivers were younger, with younger care recipients who were more likely to be their child. EDB caregivers reported more COVID-related caregiver stressors than MC or PH caregivers, including increased caregiving duties (p<.01); more family disagreements about care provision (p=.05); and worsened mental health of the care recipient (p<.01). In multivariate regression models, EDB caregivers had significantly higher anxiety; depression; and fatigue (all p<.01); more sleep disturbance (p=.05); less social participation (p<.05); and poorer overall financial well-being (p<.05). MC caregivers also reported more negative outcomes, but effects were consistently strongest for EDB caregivers. This study shows that EDB caregivers are at significantly elevated risk for negative impacts due to COVID-19 and should receive increased support and attention during this public health crisis.

scholarly journals The 2020 Portrait of American Caregivers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 681-681
Author(s):  
Regina Shih
Keyword(s):  
Family Member ◽  
Family Caregivers ◽  
Care Recipient ◽  
Health Conditions ◽  
Complex Care ◽  
The Past ◽  
Care Recipients ◽  
The Us ◽  
National Alliance

Abstract The prevalence of caregiving for an adult or child with special needs has increased significantly in the past five years (from 18.2% to over 21.3%), driven by an increase in the prevalence of caring for a family member or friend aged 50 and older. At the same time, care recipients have greater health and functional needs that necessitate care from others in comparison to 2015. These new 2020 data from the Caregiving in the US Survey by the National Alliance for Caregiving suggests that not only are more American adults taking on the role of caregiver, but they are doing so for increasingly complex care situations. This paper addresses the prevalence of caregiving including the demographics of family caregivers, relationship between the caregiver and the care recipient, health conditions of the care recipient, and living situations of care recipients and their caregivers.

scholarly journals Positive Aspects of Caregiving Among Family Caregivers of Individuals With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 358-359
Author(s):  
Mary Grace Asirot ◽  
Anna Papazyan ◽  
Yeonsu Song
Keyword(s):  
Mental Health ◽  
Sleep Quality ◽  
Family Caregivers ◽  
Care Recipient ◽  
Related Factors ◽  
Negative Experience ◽  
Care Recipients ◽  
Positive Aspects Of Caregiving ◽  
Positive Caregiving ◽  
And Behavior

Abstract Traditionally, caregiving for individuals with dementia has been viewed as a negative experience. Understanding positive aspect of caregiving and related factors is important to improve health among family caregivers. We analyzed baseline data from an ongoing dyadic sleep education trial for individuals with dementia and their caregivers (N=21 dyads; mean age 70.8± 11.1 for caregivers, 80.5± 8.3 for care-recipients). The Positive Aspects of Caregiving (PAC 9-item) was used to assess subjective satisfaction with caregiving. Other measures included Zarit Burden Interview (ZBI), SF-12 Health Survey (SF-12v2), Revised Memory and Behavior Problems Checklist (RMBPC), and Pittsburgh Sleep Quality Index (PSQI). Pearson correlations and t-tests were calculated for analyses. Caregivers most frequently endorsed that caregiving enabled them to appreciate life more (n=16 agreed a lot). Caregivers who began providing care within the first few months of the care-recipient needing care (n=16) had greater positive aspects of caregiving than those who started providing care sometime later (n=5) (36.37±7.33 versus 25.8±8.29, p=0.01). Caregivers with higher PAC scores had lower ZBI score (r=-0.49, p=0.02), better mental health on the SF-12v2 (r=0.53, p=0.01), less distress related to care-recipient behaviors on the RMBPC (r=-0.50, p=0.02), and lower PSQI subscale (perceived sleep quality) score (r= -0.46, p=0.04). Findings suggest that higher positive caregiving experience was associated with better mental health and sleep quality, and less burden and distress from the care-recipients behaviors. More research is needed to better understand this relationship and to determine possible interventions to increase positive aspects of caregiving.

Personal and organizational resources of family caregivers ' well-being

2014 ◽  
Vol 43 (3) ◽  
pp. 401-418 ◽  
Author(s):  
Susanna Maria Krisor ◽  
Jens Rowold
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Self Efficacy ◽  
Well Being ◽  
Work And Family ◽  
Organizational Resources ◽  
Content Type ◽  
Important Resource ◽  
Health Related ◽  
Work Family

Purpose – Previous research on the work-family nexus has tended to concentrate on childcare responsibilities. This neglects consideration of an increasing population of employees who care for dependents such as elders, impaired partners or disabled children. Therefore, the aim of this study is to investigate organizational and personal resources as antecedents of work-family conflict (WFC) and irritation in a sample of employed family caregivers. Design/methodology/approach – Data were collected from 508 employees within one organization who had informal family caregiving responsibilities. Findings – The results indicate that a supportive work-family culture was an important resource for reducing WFC and health-related self-efficacy reduced irritation. In sum, when a company fosters a family-friendly culture that includes working in a constructive and understanding manner with employees who have informal family caregiver responsibilities, it becomes easier for the employees to integrate the demands of work and family demands. Moreover, health-related self-efficacy is an important resource that can improve stress and future researchers should give it greater consideration. Originality/value – This study contributes to existing literature by the identification of personal and organizational resources of informal family caregivers with the aim to reduce their stress experiences.

scholarly journals Health-care Workforce Training to Effectively Support Family Caregivers of Seniors in Care

2020 ◽  
Vol 23 (2) ◽  
pp. 160-171
Author(s):  
Rachel Fisher ◽  
Jasneet Parmar ◽  
Wendy Duggleby ◽  
Peter George J. Tian ◽  
Wonita Janzen ◽  
...  
Keyword(s):  
Health Care ◽  
Family Caregivers ◽  
Health Care Professionals ◽  
Health Care Services ◽  
Well Being ◽  
Workforce Training ◽  
Community Dwelling ◽  
Canadian Health Care System ◽  
Care Services ◽  
Qualitative Thematic Analysis

Introduction Family caregivers (FCGs) play an integral, yet often invisible, role in the Canadian health-care system. As the population ages, their presence will become even more essential as they help balance demands on the system and enable community dwelling seniors to remain so for as long as possible. To preserve their own well-being and capacity to provide ongoing care, FCGs require support to the meet the challenges of their daily caregiving responsibilities. Supporting FCGs results in better care provision to community-dwelling seniors receiving health-care services, as well as enhancing the quality of life for FCGs. Although FCGs rely upon health-care professionals (HCPs) to provide them with support and services, there is a paucity of research pertaining to the type of health workforce training (HWFT) that HCPs should receive to address FCG needs. Programs that train HCPs to engage with, empower, and support FCGs are required. Objective To describe and discuss key findings of a caregiver symposium focused on determining components of HWFT that might better enable HCPs to support FCGs. Methods A one-day symposium was held on February 22, 2018 in Edmonton, Alberta, to gather the perspectives of FCGs, HCPs, and stakeholders. Attendees participated in a series of working groups to discuss barriers, facilitators, and recommendations related to HWFT. Proceedings and working group discussions were transcribed, and a qualitative thematic analysis was conducted to identify key themes. Results Participants identified the following topic areas as being essential to training HCPs in the provision of support for FCGs: understanding the FCG role, communicating with FCGs, partnering with FCGs, fostering FCG resilience, navigating healthcare systems and accessing resources, and enhancing the culture and context of care. Conclusions FCGs require more support than is currently being provided by HCPs. Training programs need to specifically address topics identified by participants. These findings will be used to develop HWFT for HCPs.

scholarly journals WHAT FAMILY CAREGIVERS THINK AND FEEL WHEN PROXY ASSESSING FROM DIFFERENT PERSPECTIVES

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S977-S977 ◽  
Author(s):  
Patricia Egan
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Emotional Experience ◽  
Assessment Process ◽  
Care Recipient ◽  
Care Recipients ◽  
Self Assessments ◽  
Affective Experiences ◽  
Service Agencies

Abstract Dementia family caregivers are routinely enlisted as proxy assessors of care recipient quality of life (QOL). Proxy assessment is not ideal because proxy assessments differ systematically from self-assessments and the assessment process can elicit negative affect from family caregivers. Prompting adoption of the care recipient’s perspective can enhance assessment congruence and may improve the emotional experience for assessors. This study explored family caregivers’ cognitive and affective experiences during QOL proxy assessments made from both their own and care recipients’ perspectives. Thirty-six dementia family caregivers were recruited from senior service agencies. Subjects completed the Quality of Life-Alzheimer Disease (QOL-AD), Caregiver Version using standard instructions to assess QOL across thirteen domains of their care recipient’s life without specifying the perspective to be used. Subjects were next asked to repeat the QOL-AD with instructions to adopt the perspective of their care recipient, as they imagined it to be. Subjects were then interviewed about what they thought and felt during each proxy assessment experience. Content analysis indicated that spontaneous perspective shifts and response shifts frequently occurred. Most subjects (91.7%) reported changed thinking for one or more QOL-AD domains when they were prompted to switch perspectives. Over half (61.12%) reported changed affect when switching perspectives and 90.9% of those experiencing changed affect reported affective improvement. Little or no affective change was reported by 38.89%. Findings suggest awareness of perspective can enhance clinical interpretation of proxy assessed QOL and can inform clinical response to dementia family caregivers who experience negative emotions while proxy reporting QOL.

scholarly journals DO INTRA-PROXY GAPS EMERGE WHEN FAMILY CAREGIVERS ASSESS QOL FROM DIFFERENT PERSPECTIVES?

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S979-S979
Author(s):  
Patricia Egan
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Care Recipient ◽  
Personal Factors ◽  
Care Recipients ◽  
The Family ◽  
Health Factors ◽  
Service Agencies

Abstract Dementia family caregivers are routinely enlisted as proxy assessors of care recipients’ quality of life (QOL). This study explored whether prompts to change perspective during QOL assessment could elicit an intra-proxy gap. The intra-proxy gap was hypothesized to be any difference between those assessments made from the caregiver’s own perspective and those made from the adopted perspective of the care recipient, as the care giver imagined it to be (Pickard and Knight, 2005). Thirty-six dementia family caregivers were recruited from senior service agencies. Subjects completed the Quality of Life-Alzheimer Disease (QOL-AD), Caregiver Version under two conditions: First, from an unprompted perspective and second, from the adopted perspective of the care recipient, as the family caregiver imagined it to be. T-testing indicated intra-proxy gaps emerged for eleven of the QOL-AD’s thirteen domains. For these domains, QOL scores were higher when assessed from the care recipient’s perspective, as the family caregiver imagined it to be. The sample was then repeatedly bisected using caregivers’ personal, relational, and health factors. T-testing indicated that family caregivers’ personal factors were associated with intra-proxy gaps across more QOL-AD domains than their relational or health factors were. Three personal factors, being of older age, having more empathetic concern, and having more empathetic distress, were associated with intra-proxy gaps more frequently than other personal factors were. Findings suggest that clinicians should be alert for perspective employed by proxy assessors and for the possibility of intra-proxy gaps. Recognition of these gaps could help improve interpretation of QOL scores.

Ethical Issues in Family Care Today

2016 ◽  
Vol 34 (1) ◽  
pp. 67-87 ◽  
Author(s):  
Patrick Barrett ◽  
Mary Butler ◽  
Beatrice Hale
Keyword(s):  
Lived Experience ◽  
Family Caregivers ◽  
Ethical Issues ◽  
Family Care ◽  
Well Being ◽  
Formal Caregivers ◽  
Care Recipients ◽  
Practical Concern ◽  
Social Scientific ◽  
Caregiver Role

The abstract consideration of ethical questions in family and informal caregiving might rightly be criticized for ignoring the lived experience of people. This chapter seeks to avoid such oversight by reflecting on ethical issues in family care in a way that is based on careful social scientific inquiry into the well-being of caregivers. The chapter draws on our research and experience in working with family caregivers, both professionally and personally. We step back from a practical concern with policies to support the well-being of caregivers to consider ethical issues associated with their typically hidden role. The chapter begins by noting the growing reliance on family care today. It proceeds to outline the dynamic experience of moving into and out of the caregiver role, before discussing key ethical issues associated with family care. Many of these stem from the risk that caregivers can come to share in the reduced circumstances and vulnerability of those for whom they care. Critical ethical issues are related to the typically "unboundaried" responsibility of family caregivers for the well-being of the cared-for person, something that can be contrasted with the more boundaried and intermittent responsibility of formal caregivers. Additionally, all too often, family caregivers encounter situations where their responsibilities exceed their capacities, but where a choice to not provide care will result in harm to the cared-for person. In discussing these issues, this chapter seeks to make the case for developing more responsive forms of support that promote positive benefits for both caregivers and care recipients.

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