scholarly journals Changes in Family Caregiver Roles and Interactions During the COVID-19 Pandemic

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 935-935
Author(s):  
Rajean Moone ◽  
Elizabeth Lightfoot Kamal Abdi Suleiman ◽  
Courtney Kutzler ◽  
Jacob Otis ◽  
Kenneth Turck ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Assisted Living ◽  
Family Members ◽  
Virus Transmission ◽  
Structured Interview ◽  
Mitigation Strategies ◽  
Care Recipient ◽  
Federal State ◽  
Care Recipients ◽  
State And Local

Abstract Family caregivers provide the majority of support for older adults and people with disabilities in the U.S. The onset of the COVID-19 pandemic forced radical changes in duties and relationships between family caregivers and care recipients. These changes can be attributed to fears of virus transmission as well as federal, state and local government mitigation strategies resulting in social distancing and quarantining limiting caregiving interactions. This qualitative investigation conducted 55 Zoom interviews over summer 2020 with family caregivers to explore their changing roles and duties during the pandemic. Researchers utilized a semi-structured interview guide to explore caregiver experiences with COVID-19. The average age of the caregiver participants was 59 and the average age of the care recipients for whom they provided care was 74. All participants provided unpaid care for family members. Interviews were conducted in English (n=40), Spanish (n=5), Somali (n=5) and Korean (n=5). Care recipients resided in a facility (nursing home, memory care, ICF-DD, or other assisted living) (70%) with the caregiver (20%), and in a separate independent setting (10%). Data from each interview were coded into themes by two researchers. Themes that emerged from the analyses included concerns about care recipient mental and physical health deterioration, lack of communication from formal providers, change in relationships with other family members, and future concerns. Implications for additional research and practice are included.

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.

An Emergency Preparedness Response to Opioid-Prescribing Enforcement Actions in Maryland, 2018-2019

2021 ◽  
Vol 136 (1_suppl) ◽  
pp. 9S-17S
Author(s):  
Jessica C. Acharya ◽  
B. Casey Lyons ◽  
Vijay Murthy ◽  
Jennifer Stanley ◽  
Carly Babcock ◽  
...  
Keyword(s):  
Emergency Preparedness ◽  
Data Access ◽  
Opioid Use Disorder ◽  
Lessons Learned ◽  
Mitigation Strategies ◽  
Federal State ◽  
Opioid Use ◽  
Time Data ◽  
Enforcement Action ◽  
State And Local

Federal and state enforcement authorities have increasingly intervened on the criminal overprescribing of opioids. However, little is known about the health effects these enforcement actions have on patients experiencing disrupted access to prescription opioids or medication-assisted treatment/medication for opioid use disorder. Simultaneously, opioid death rates have increased. In response, the Maryland Department of Health (MDH) has worked to coordinate mitigation strategies with enforcement partners (defined as any federal, state, or local enforcement authority or other governmental investigative authority). One strategy is a standardized protocol to implement emergency response functions, including rapidly identifying health hazards with real-time data access, deploying resources locally, and providing credible messages to partners and the public. From January 2018 through October 2019, MDH used the protocol in response to 12 enforcement actions targeting 34 medical professionals. A total of 9624 patients received Schedule II-V controlled substance prescriptions from affected prescribers under investigation in the 6 months before the respective enforcement action; 9270 (96%) patients were residents of Maryland. Preliminary data indicate fatal overdose events and potential loss of follow-up care among the patient population experiencing disrupted health care as a result of an enforcement action. The success of the strategy hinged on endorsement by leadership; the establishment of federal, state, and local roles and responsibilities; and data sharing. MDH’s approach, data sources, and lessons learned may support health departments across the country that are interested in conducting similar activities on the front lines of the opioid crisis.

scholarly journals That's not my Robert! Identity maintenance and other warrants in family members' claims about mistreatment in old-age care

2009 ◽  
Vol 30 (4) ◽  
pp. 627-647 ◽  
Author(s):  
TOVE HARNETT ◽  
HÅKAN JÖNSON
Keyword(s):  
Old Age ◽  
Family Members ◽  
Care Staff ◽  
Care Recipient ◽  
Care Providers ◽  
Elder Mistreatment ◽  
Moral View ◽  
Staff Members ◽  
Care Recipients ◽  
Psychological Harm

ABSTRACTThis study has explored how family members of care recipients define and sustain claims of mistreatment in old-age care. Twenty-one informants were recruited from an association of relatives of care recipients in Sweden. Using argumentation analysis, four warrants about mistreatment were identified from the qualitative interview data: they referred to physical harm, psychological harm, social-care deficiencies and identity subversion. The first three categories are similar to those recognised in previous research on elder mistreatment, but the fourth, which is described in detail in the article, is less familiar: elder mistreatment as the violation of an older person's identity. The family members backed their claims about staff members' violation of a care recipient's persona or identity by using arguments that drew on their unique knowledge of the care recipient's appearance, daily routines and preferred activities. They also described their attempts to protect the dignity and identity of a care recipient, their fears of abuse, and actual cases of conflict and retribution by care staff. They consistently positioned themselves as guardians of identity through their claims of mistreatment. The study provides important knowledge about family members' moral view of elder mistreatment, which may enhance the understanding of conflicts between formal care providers and family members.

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 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 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.

Potentially preventable hospitalizations in dementia: family caregiver experiences

2017 ◽  
Vol 29 (7) ◽  
pp. 1201-1211 ◽  
Author(s):  
Tatiana Sadak ◽  
Susan Foster Zdon ◽  
Emily Ishado ◽  
Oleg Zaslavsky ◽  
Soo Borson
Keyword(s):  
Lived Experience ◽  
Family Caregivers ◽  
Care Recipient ◽  
Preventable Hospitalizations ◽  
Health Crisis ◽  
Care Recipients ◽  
People With Dementia ◽  
Mitigating Factors ◽  
Health Event ◽  
Caregiver Experiences

ABSTRACTBackground:Health crises in persons living with dementia challenge their caregivers to make pivotal decisions, often under pressure, and to act in new ways on behalf of their care recipient. Disruption of everyday routines and heightened stress are familiar consequences of these events. Hospitalization for acute illness or injury is a familiar health crisis in dementia. The focus of this study is to describe the lived experience of dementia family caregivers whose care recipients had a recent unplanned admission, and to identify potential opportunities for developing preventive interventions.Methods:Family caregivers (n = 20) of people with dementia who experienced a recent hospitalization due to an ambulatory care sensitive condition or fall-related injury completed phone interviews. Interviews used semi-structured protocols to elicit caregivers’ reactions to the hospitalization and recollections of the events leading up to it.Results:Analysis of interview data identified four major themes: (1) caregiver is uncertain how to interpret and act on the change; (2) caregiver is unable to provide necessary care; (3) caregiver experiences a personal crisis in response to the patient's health event; (4) mitigating factors may prevent caregiver crises.Conclusions:This study identifies a need for clinicians and family caregivers to work together to avoid health crises of both caregivers and people with dementia and to enable caregivers to manage the health of their care recipients without sacrificing their own health and wellness.

scholarly journals Grief Experiences in Family Caregivers of Children with Autism Spectrum Disorder (ASD)

2019 ◽  
Vol 16 (23) ◽  
pp. 4821 ◽  
Author(s):  
Jorge Bravo-Benítez ◽  
María Nieves Pérez-Marfil ◽  
Belén Román-Alegre ◽  
Francisco Cruz-Quintana
Keyword(s):  
Autism Spectrum Disorder ◽  
Family Caregivers ◽  
Family Members ◽  
Well Being ◽  
Structured Interview ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Children With Asd ◽  
Caregiver Role ◽  
The Impact

The main objective of this study was to analyse the experience of grief and feelings of loss in family caregivers of children diagnosed with autism spectrum disorder (ASD), as well as the perceived overload from taking on the primary caregiver role. Twenty family caregivers of children with ASD participated. The family members were assessed using an ad-hoc semi-structured interview that addressed the families’ reactions to the diagnosis, implications for daily functioning, and concerns for the immediate and long-term future of their relatives with ASD. The results indicate that family caregivers of children with ASD endure intense and continuous sorrow and grief due to the impact that having and caring for a child with these characteristics has on all aspects of their lives. These data highlight the importance of creating support and intervention programmes and services focused on the feelings and manifestations of ambiguous grief that occur in these family members, in order to improve their well-being and quality of life and reduce caregiver role overload.

scholarly journals Predictors of Symptoms Remission Among Family Caregivers of Individuals With Dementia Receiving REACH VA

2019 ◽  
Vol 34 (6) ◽  
pp. 376-380
Author(s):  
Cory K. Chen ◽  
Nicole Nehrig ◽  
Karen S. Abraham ◽  
Binhuan Wang ◽  
Amy P. Palfrey ◽  
...  
Keyword(s):  
Social Support ◽  
Emotion Regulation ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Behavioral Intervention ◽  
Care Recipient ◽  
Care Recipients ◽  
Attachment Quality ◽  
Affective Instability ◽  
Symptom Remission

Resources for Enhancing All Caregivers Health (REACH VA) is a behavioral intervention for caregivers of individuals with dementia disseminated in the VA. Although shown to improve caregiver and care recipient outcomes, some caregivers continue to experience depression or caregiver burden following the intervention. Factors that predict symptom remission following REACH VA are unknown. The present study investigated attachment, social support, and psychopathology as predictors of symptom remission for family caregivers who completed REACH VA. Caregivers who do not remit perceive lower levels of social support from loved ones, endorse poorer attachment quality, and have more personality disorder characteristics, particularly affective instability. These factors that impair caregivers’ abilities to be effectively attuned to the needs of their care recipients and to reap benefits from a brief and focused behavioral intervention such as REACH VA. Interventions that target caregiver interpersonal functioning and emotion regulation skills may be helpful to those who do not respond to REACH VA.

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