Caregiver burden among adults caring for their Holocaust-survivor parents during the COVID-19 pandemic

2021 ◽  
pp. 1-6
Author(s):  
Ruth Maytles ◽  
Maya Frenkel-Yosef ◽  
Amit Shrira
Keyword(s):  
Caregiver Burden ◽  
Stress Disorder ◽  
Care Recipient ◽  
Holocaust Survivor ◽  
Ptsd Symptoms ◽  
Adult Care ◽  
Social Burden ◽  
Care Recipients ◽  
Physical Burden ◽  
The Holocaust

Abstract This study aimed to examine the caregiver burden among offspring of Holocaust survivors (OHS) caring for their parents during the COVID-19 pandemic, hypothesizing that caregivers whose parents suffer from posttraumatic stress disorder (PTSD) would report an increased burden. The sample consisted of 109 caregivers with older adult care recipient parents (average caregivers’ age = 57.67, SD = 8.49). Caregivers were divided into three groups: 20 OHS who reported that at least one care recipient had PTSD, 60 OHS who reported that their care recipients did not have PTSD, and 29 comparison caregivers (whose care recipients did not undergo the Holocaust). Caregivers completed questionnaires about SARS-CoV-2 exposure, COVID-19 concerns, helping their care recipients, their experiences of caregiver burden, and perceived changes to their caregiver burden during the pandemic. The caregivers also reported PTSD symptoms—in themselves as well as in their care recipients. Relative to comparisons, OHS with parental PTSD reported higher caregiver burden in four aspects: time-dependent burden, developmental burden, physical burden, and social burden. Furthermore, OHS reported a greater perceived increase in caregiver burden during the pandemic than the comparisons. The study findings illuminate the difficulties OHS caregivers, especially those whose care recipients have PTSD, face during the COVID-19 pandemic. This group of caregivers is at risk of experiencing more distress and may need help and support. Further research is needed to determine whether people taking care of their posttraumatic parents following other massive traumatic events also feel a heavier caregiver burden—both in general and specifically during the current pandemic.

Understanding Burden in Caregivers of Adults With Dysphagia: A Systematic Review

2021 ◽  
pp. 1-16
Author(s):  
Daniella Rangira ◽  
Hiba Najeeb ◽  
Samantha E. Shune ◽  
Ashwini Namasivayam-MacDonald
Keyword(s):  
Older Adults ◽  
Caregiver Burden ◽  
Social Life ◽  
English Language ◽  
Community Dwelling ◽  
Care Recipient ◽  
Adult Care ◽  
Care Recipients ◽  
Meta Analyses ◽  
The Impact

Introduction: A previous review suggested that dysphagia is negatively associated with burden in caregivers of community-dwelling older adults. Other literature suggests similar patterns of burden may be found across adult patient populations. The current study, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, was conducted to determine the impact of dysphagia on caregivers of adults, regardless of etiology. Method: Five electronic databases were searched using terms based on a review by Namasivayam-MacDonald and Shune (2018) but included all adults rather than only older adults. Searches were limited to English-language empirical studies discussing caregiver burden, included caregivers of adult care recipients, had some care recipients with dysphagia, did not include palliative care, and published in a peer-reviewed journal. Results: The search yielded 1,112 unique abstracts, of which 17 were accepted. Across studies, caregiver burden was found to increase due to dysphagia in care recipients. Commonly reported dysphagia-related causes of burden included changes in meal preparation, disruption in lifestyle, effects on social life, lack of support, insertion of feeding tubes, and fear of aspiration. In general, dysphagia-related caregiver burden was a common experience across caregivers, regardless of patient population, caregiver age, and relationship between caregiver and care recipient. Meta-analyses suggest 71% of caregivers of adults with dysphagia experience some degree of burden. Conclusions: These findings support that dysphagia negatively impacts caregiver burden and suggests sources of burden that clinicians can address within dysphagia management to support caregivers. However, more research is needed to better delineate sources of burden, especially those specific to various dysphagia etiologies, to better meet the needs of our patients.

scholarly journals Psychometric Properties of the Spanish Version of the Caregiver Burden Inventory

2019 ◽  
Vol 16 (2) ◽  
pp. 217 ◽  
Author(s):  
Fernando Vázquez ◽  
Patricia Otero ◽  
Miguel Simón ◽  
Ana Bueno ◽  
Vanessa Blanco
Keyword(s):  
Mental Disorder ◽  
Psychometric Properties ◽  
Caregiver Burden ◽  
Emotional Distress ◽  
Internal Consistency ◽  
Personal Life ◽  
Emotional Burden ◽  
Social Burden ◽  
Physical Burden ◽  
Total Burden

Although the Caregiver Burden Inventory (CBI) is the most widely used multidimensional burden instrument for assessing perceived burden of caregivers, there is no data on its psychometric properties in Spanish, nor on caregivers of dependent persons with various diseases. The objective of this study was to translate the CBI into Spanish and validate it in caregivers of dependent persons with various diseases. Trained evaluators administered the CBI and assessed emotional distress and probable mental disorder in 201 caregivers (87.1% women, mean age 56.2 years). The internal consistency of the CBI was 0.89 (0.74–0.83 among the subscales). There was a significant correlation of emotional distress with both the total burden and each subscale (p < 0.001 in all cases). A total score of 39 and scores of 16, 9, 8, 4, and 2 in burden per time dedicated to care, personal life burden, physical burden, social burden, and emotional burden were suitable cut-off points to discriminate caregivers with probable mental disorder (sensitivity = 63.0%–75.6%, specificity = 63.4%–74.4%). To achieve a greater goodness of fit, the model was re-specified, resulting in a shortened (15-item) instrument. The internal consistency reliability coefficients of the 15-item CBI were satisfactory (Cronbach α = 0.83; 0.77–0.86 among the subscales). Within the 15-item CBI, emotional distress was significantly correlated with the total burden, personal life burden, physical burden, social burden (p < 0.001 in all those cases), and emotional burden (p = 0.001). A total score of 25 and scores of 12, 5, 5, 3, and 1, respectively, in the subscales were identified as cut-off points to discriminate caregivers with probable mental disorder (sensitivity = 46.2%–70.6%, specificity = 43.9%–79.3%). Therefore, the 15-item CBI validly measured caregiver burden with better fit and more parsimoniously than the original CBI.

scholarly journals EMERGING ADULT CAREGIVERS: PERCEPTIONS OF OLDER ADULT CARE RECIPIENTS, QUALITY OF CONTACT, AND AGEISM

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S952-S952
Author(s):  
Anastasia E Canell ◽  
Grace Caskie
Keyword(s):  
Older Adults ◽  
Older Adult ◽  
Social Role ◽  
Emerging Adult ◽  
Care Recipient ◽  
Adult Care ◽  
Care Recipients ◽  
Adult Caregivers ◽  
Quality Of Contact

Abstract Approximately 12-18% of family caregivers to older adults in the U.S. are 18-25 years old (i.e., emerging adulthood), yet minimal research has focused on this subgroup of caregivers (Levine, 2005; Smyth, Blaxland, & Cass, 2011). Individuals’ perceptions of an older adult’s social role relate to their attitudes toward older adults as a group (Hummert, 1999; Kite & Wagner, 2002). However, whether perceptions that emerging adult caregivers hold of older adults are specific to the social role of “care-recipient” has not been studied. A sample of 210 informal caregivers (ages 18-25) were surveyed to collect qualitative responses regarding perceptions of an older adult care-recipient (age 65+) and to assess quality of contact with the care-recipient and ageist attitudes. Participants were asked to provide five adjectives describing their older adult care-recipient. Approximately 43% provided a set of adjectives in which 80%-100% were coded as positive adjectives (e.g., “active”, “wise”); similarly, half of the sample’s adjective sets contained 0%-25% negative adjectives (e.g., “helpless”, “obnoxious”). The quality of contact with the care-recipient was significantly correlated (p&lt;.001) with the percentage of positive (r=.47) and negative (r=-.49) adjectives. Scores on the Fraboni Scale of Ageism were also significantly correlated (p&lt;.01) with the percentage of positive (r=-.19) and negative (r=.20) adjectives. Overall, these emerging adult caregivers had generally positive perceptions of their older adult care-recipients, and these perceptions reflected the positive quality of contact with the care-recipient. Less ageist attitudes’ relationship with more positive and less negative perceptions may have implications for experiences within a caregiving dyad.

Contributors to Poststroke Dysphagia-Related Caregiver Burden

2021 ◽  
pp. 1-13
Author(s):  
Cameron Davis ◽  
Ashwini M. Namasivayam-MacDonald ◽  
Samantha E. Shune
Keyword(s):  
Quality Of Life ◽  
Caregiver Burden ◽  
Care Recipient ◽  
Care Recipients ◽  
Area Of Interest ◽  
Quality Of Life Scale ◽  
Life Scale ◽  
Related Quality ◽  
Perceived Impact

Purpose Caregiver burden negatively impacts both stroke survivor and caregiver well-being. Thus, it is important to better understand the individual- and dyadic-level variables that may contribute to dysphagia-related caregiver burden. The aim of this preliminary study was to identify survivor-, caregiver-, and dyadic-specific factors associated with burden in couples experiencing poststroke dysphagia. Method Twenty-eight stroke survivors (“care recipients”) with dysphagia and their spouses (“caregivers”) participated. Care recipients and caregivers completed a survey from which scores for the following variables were derived: dysphagia-related caregiver burden, survivor- and spouse-perceived impact of dysphagia on mealtimes (social, mealtime logistics), dyadic congruence on perceived impact, International Dysphagia Diet Standardisation Initiative Functional Diet Scale, Swallowing-Related Quality of Life Scale, and Stroke Impact Scale (cognitive, emotional, physical, and social domains). Spearman's rho and point biserial correlation coefficients were calculated to determine the factors related to caregiver burden. Results Increased burden was significantly associated with greater care recipient– and spouse-perceived impact of dysphagia on mealtime logistics; however, burden was not associated with measures of dyadic congruence of perceived impact. Notably, increased burden was also associated with increased diet restrictiveness and decreased swallow-specific quality of life. Dysphagia-related caregiver burden was not associated with measures of stroke impact/severity across any domain. Conclusions Factors related to dysphagia-related caregiver burden are multifactorial and include both care recipient (e.g., International Dysphagia Diet Standardisation Initiative Functional Diet Scale, Swallowing-Related Quality of Life Scale, perceived impact of dysphagia on mealtime logistics) and caregiver (e.g., perceived impact of dysphagia on mealtime logistics) variables. The results of this preliminary investigation support the need to incorporate aspects of counseling and family-centered care into our management practices, a growing area of interest for speech-language pathologists.

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.

scholarly journals Dyadic Psychosocial eHealth Interventions: Systematic Scoping Review

10.2196/15509 ◽  
2020 ◽  
Vol 22 (3) ◽  
pp. e15509 ◽  
Author(s):  
Kelly M Shaffer ◽  
Ashley Tigershtrom ◽  
Hoda Badr ◽  
Stephanie Benvengo ◽  
Marisol Hernandez ◽  
...  
Keyword(s):  
Scoping Review ◽  
Family Members ◽  
Intervention Development ◽  
Psychosocial Interventions ◽  
Care Recipient ◽  
Adult Care ◽  
Comprehensive Overview ◽  
Eligibility Criteria ◽  
Care Recipients ◽  
Ehealth Intervention

Background Dyadic psychosocial interventions have been found beneficial both for people coping with mental or physical health conditions as well as their family members and friends who provide them with support. Delivering these interventions via electronic health (eHealth) may help increase their scalability. Objective This scoping review aimed to provide the first comprehensive overview of dyadic eHealth interventions for individuals of all ages affected by mental or physical illness and their family members or friends who support them. The goal was to understand how dyadic eHealth interventions have been used and to highlight areas of research needed to advance dyadic eHealth intervention development and dissemination. Methods A comprehensive electronic literature search of PubMed, EMBASE, Cochrane, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO was conducted for articles published in the English language through March 2019. Eligible records described a psychosocial eHealth intervention that intervened with both care recipients and their support person. Results A total of 7113 records were reviewed of which 101 met eligibility criteria. There were 52 unique dyadic eHealth interventions identified, which were tested across 73 different trials. Of the unique interventions, 33 were conducted among dyads of children and their supporting parent, 1 was conducted with an adolescent-young adult care recipient population, and the remaining 18 were conducted among adult dyads. Interventions targeting pediatric dyads most commonly addressed a mental health condition (n=10); interventions targeting adult dyads most commonly addressed cancer (n=9). More than three-fourths of interventions (n=40) required some human support from research staff or clinicians. Most studies (n=64) specified one or more primary outcomes for care recipients, whereas less than one-fourth (n=22) specified primary outcomes for support persons. Where specified, primary outcomes were most commonly self-reported psychosocial or health factors for both care recipients (n=43) and support persons (n=18). Results of the dyadic eHealth intervention tended to be positive for care recipients, but evidence of effects for support persons was limited because of few studies specifying primary outcomes for supporters. Trials of dyadic eHealth interventions were most commonly randomized controlled trials (RCTs; n=44), and RCTs most commonly compared the dyadic eHealth intervention to usual care alone (n=22). Conclusions This first comprehensive review of dyadic eHealth interventions demonstrates that there is substantial, diverse, and growing literature supporting this interventional approach. However, several significant gaps were identified. Few studies were designed to evaluate the unique effects of dyadic interventions relative to individual interventions. There was also limited assessment and reporting of outcomes for support persons, and there were no interventions meeting our eligibility criteria specifically targeting the needs of older adult dyads. Findings highlight areas of research opportunities for developing dyadic eHealth interventions for novel populations and for increasing access to dyadic care.

scholarly journals Dyadic Psychosocial eHealth Interventions: Systematic Scoping Review (Preprint)

2019 ◽  
Author(s):  
Kelly M Shaffer ◽  
Ashley Tigershtrom ◽  
Hoda Badr ◽  
Stephanie Benvengo ◽  
Marisol Hernandez ◽  
...  
Keyword(s):  
Scoping Review ◽  
Family Members ◽  
Intervention Development ◽  
Psychosocial Interventions ◽  
Care Recipient ◽  
Adult Care ◽  
Comprehensive Overview ◽  
Eligibility Criteria ◽  
Care Recipients ◽  
Ehealth Intervention

BACKGROUND Dyadic psychosocial interventions have been found beneficial both for people coping with mental or physical health conditions as well as their family members and friends who provide them with support. Delivering these interventions via electronic health (eHealth) may help increase their scalability. OBJECTIVE This scoping review aimed to provide the first comprehensive overview of dyadic eHealth interventions for individuals of all ages affected by mental or physical illness and their family members or friends who support them. The goal was to understand how dyadic eHealth interventions have been used and to highlight areas of research needed to advance dyadic eHealth intervention development and dissemination. METHODS A comprehensive electronic literature search of PubMed, EMBASE, Cochrane, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO was conducted for articles published in the English language through March 2019. Eligible records described a psychosocial eHealth intervention that intervened with both care recipients and their support person. RESULTS A total of 7113 records were reviewed of which 101 met eligibility criteria. There were 52 unique dyadic eHealth interventions identified, which were tested across 73 different trials. Of the unique interventions, 33 were conducted among dyads of children and their supporting parent, 1 was conducted with an adolescent-young adult care recipient population, and the remaining 18 were conducted among adult dyads. Interventions targeting pediatric dyads most commonly addressed a mental health condition (n=10); interventions targeting adult dyads most commonly addressed cancer (n=9). More than three-fourths of interventions (n=40) required some human support from research staff or clinicians. Most studies (n=64) specified one or more primary outcomes for care recipients, whereas less than one-fourth (n=22) specified primary outcomes for support persons. Where specified, primary outcomes were most commonly self-reported psychosocial or health factors for both care recipients (n=43) and support persons (n=18). Results of the dyadic eHealth intervention tended to be positive for care recipients, but evidence of effects for support persons was limited because of few studies specifying primary outcomes for supporters. Trials of dyadic eHealth interventions were most commonly randomized controlled trials (RCTs; n=44), and RCTs most commonly compared the dyadic eHealth intervention to usual care alone (n=22). CONCLUSIONS This first comprehensive review of dyadic eHealth interventions demonstrates that there is substantial, diverse, and growing literature supporting this interventional approach. However, several significant gaps were identified. Few studies were designed to evaluate the unique effects of dyadic interventions relative to individual interventions. There was also limited assessment and reporting of outcomes for support persons, and there were no interventions meeting our eligibility criteria specifically targeting the needs of older adult dyads. Findings highlight areas of research opportunities for developing dyadic eHealth interventions for novel populations and for increasing access to dyadic care.

scholarly journals The Relationship Between Functional Decline of Care Recipients and Health of Caregivers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 361-361
Author(s):  
Jinmyoung Cho ◽  
Alan Stevens
Keyword(s):  
Physical Health ◽  
Cognitive Functioning ◽  
Caregiver Burden ◽  
Physical Functioning ◽  
Chronic Conditions ◽  
Functional Decline ◽  
Care Recipient ◽  
Self Rated Health ◽  
Care Recipients

Abstract Pearlin’s stress-process model (2010) depicts that functional decline in care-recipient would shape caregiving burden and impact on caregiver’s health. With this background, we explored how the changes in care-recipients’ physical and cognitive functioning are related to the caregivers’ physical health. A total of 853 care-recipients from the Rounds 1 and 5 of the National Health and Aging Trend Study (NHATS) and their 1,303 caregivers from Round 5 of National Study of Caregiving (NSOC) were included. Multiple regression analyses were conducted to identify correlates of self-rated health and the number of chronic conditions with the change in physical and cognitive functioning from Round 1 to 5 and multidimensional caregiver burden. Physical functioning measured by the NHATS short physical performance battery included balance stands, walking chair stands, grip strength, and peak airflow. Memory, orientation, and executive functioning measured cognitive functioning. Multidimensional caregiver burden includes four domains (emotional, psychological, relationship, and resilience) identified with factor analysis. Background factors (recipient’s age, assisting recipients for 5 years, race/ethnicity, and number of chronic conditions of recipient) were included as covariates. After controlling covariates, the data showed that 5-year change of physical functioning and caregiver’s emotional burden were negatively significant for self-rated health; and assisting care-recipients for 5 years or more was significant for more numbers of chronic conditions among caregivers. Findings highlight that caregivers’ physical health is closely associated with care-recipient’s functional decline for long-term caregiving experiences. Further investigation on caregiver’s physical health using multiple health outcomes is needed to promote physical health in long-term caregivers.

scholarly journals Do State and Trait Measures Measure States and Traits? The Case of Community-Dwelling Caregivers of Older Adults

Assessment ◽  
2019 ◽  
pp. 107319111988858
Author(s):  
Charles E. Lance ◽  
Juliette Christie ◽  
Gail M. Williamson
Keyword(s):  
Community Dwelling ◽  
Care Recipient ◽  
Adult Care ◽  
Psychological Constructs ◽  
Latent Constructs ◽  
Care Recipients ◽  
Communal Behavior ◽  
State And Trait Anxiety ◽  
Respective State

Spielberger’s state and trait anxiety and anger scales are widely used and documented, but there is little or no direct evidence that they actually measure their respective state and trait aspects as was intended. We conducted latent state-trait analyses on data collected from 310 community-dwelling caregivers of older adult care recipients and found that (a) both state and trait scales reflected a mixture of state and trait aspects of their latent constructs, (b) state scales reflected more state-like variance than did corresponding trait scales, but (c) both state and trait scales were dominated by stable trait-like variance. Follow-up bivariate latent state-trait analyses indicated that correlations between trait components of anger and anxiety correlated more strongly with trait components of caregiver–care recipient mutually communal behavior and care recipient problem behavior than did state–state component correlations. Implications for the measurement of state and trait components of psychological constructs are discussed.

scholarly journals Parental Holocaust Exposure, Related PTSD Symptoms and Subjective Aging Across the Generations

2019 ◽  
Vol 75 (1) ◽  
pp. 30-41
Author(s):  
Amit Shrira
Keyword(s):  
Stress Disorder ◽  
Holocaust Survivor ◽  
Ptsd Symptoms ◽  
Subjective Age ◽  
Traumatic Exposure ◽  
Intergenerational Effect ◽  
Serial Mediation ◽  
Perceptions Of Aging ◽  
Subjective Aging ◽  
Mediation Models

Abstract Objectives Traumatic exposure and posttraumatic stress disorder (PTSD) are related to less favorable perceptions of aging. The current study examined parental PTSD and perceptions of aging among old Holocaust survivor (HS) parents and their middle-aged offspring. Method Parents (mean age = 81.79) and their offspring (mean age = 55.41) reported PTSD symptoms, attitudes toward aging and subjective age. Offspring also rated how they perceive both their parents’ aging and subjective age. Dyads were divided into three groups: HS with probable PTSD (n = 21 dyads), HS without probable PTSD (n = 65 dyads), and comparison parents without probable PTSD (n = 57 dyads). Results Relative to parents and offspring from other groups, HS parents with probable PTSD and their offspring had both less favorable attitudes toward their own aging as well as reporting feeling older. Offspring of posttraumatic HS also held less favorable attitudes toward parents’ aging and perceived their own parents as being older. Serial mediation models showed that the effect of parental PTSD on offspring’s subjective aging was serially mediated by parental subjective aging and offspring’s perception of parents’ aging. Discussion The study provides the first evidence that posttraumatic distress is related to less favorable perceptions of aging across generations in HS families. Possible mechanisms for such intergenerational effect and the implication for interventions are discussed.

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