Journal articles on the topic 'Wellbeing of caregiver'
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Frias, Cindy E., Esther Cabrera, and Adelaida Zabalegui. "Informal Caregivers’ Roles in Dementia: The Impact on Their Quality of Life." Life 10, no. 11 (October 23, 2020): 251. http://dx.doi.org/10.3390/life10110251.
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The constantly changing process of caring for a person with dementia affects the informal caregivers’ role due to its psychosocial impact. This cross-sectional study aimed to analyze the impact of the Person with Dementia informal caregiver’s role caregiver to a person with dementia on the self-perceived quality of life (QoL) of the caregiver. In total, 160 informal caregivers were recruited between January and December 2019. Informal caregivers’ quality of life was assessed using the European Quality of Life 5-Dimension scale, burden with the Zarit Burden Scale, emotional wellbeing using the General Health Questionnaire, and caregiver reactions using Caregiver Reaction Aspects. Patients’ cognitive impairment was assessed with the Mini-Mental State Examination, their quality of life using Quality of Life in Alzheimer’s Disease, and neuropsychiatric symptoms using the Neuropsychiatric Inventory. Outcomes were studied using the Pearson correlation coefficient and ANOVA test. Most informal caregivers’ outcomes were significantly associated with their quality of life. Male informal caregivers have a slightly better quality of life than female caregivers (p < 0.001). Caregiver burden (p < 0.001), psychological wellbeing (p < 0.001) and negative aspects of caregiving on health (p < 0.001) correlated moderately with informal caregivers’ quality of life. Factors associated with dementia, including the course of the illness and its severity with the presence of neuropsychiatric symptoms can negatively affect the informal caregiver’s role and produce a low self-perception of quality of life; thus, social and professional support for informal caregivers is essential.
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Sims, Tai, Kristine Talley, Joseph Gaugler, Cynthia Peden-McAlpine, Laura Kirk, and Fang Yu. "ENGAGING OLDER ADULTS WITH ALZHEIMER’S DISEASE IN EXERCISE: IMPACT ON CAREGIVERS." Innovation in Aging 6, Supplement_1 (November 1, 2022): 777. http://dx.doi.org/10.1093/geroni/igac059.2811.
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Abstract Informal caregivers provide the bulk of care for persons with Alzheimer’s dementia (PWAD) living at home, resulting in increased burden, and deteriorations in wellbeing and health. The stress process model hypothesizes characteristics of PWAD influence caregiver outcomes. Few studies have identified if engaging PWAD in exercise influences caregiver outcomes. This ancillary mixed methods study of a RCT evaluated the impact of a 6-month, moderate-intensity aerobic exercise intervention for community-dwelling PWAD on family caregiver burden, wellbeing and general health. Quantitative data was collected at baseline, 3, 6, 9 and 12 months using Zarit Burden Interview, Caregiver Strain Index, Caregiver Wellbeing Scale, and 36-item Short Form Health Survey. Qualitative data was collected at 6 and 9 months using semi-structured interviews. The convergent mixed methods design included ANCOVA analyses of quantitative and content analysis of qualitative data. Participants were 25 (17 intervention, 8 control) caregivers aged 34–86 years who were primarily white, females that lived with care-recipient. Based on group assignment, quantitative and qualitative results provided mixed insight on influence of intervention on burden and wellbeing, and found no influence on general health. Quantitative findings indicated caregiver characteristics of relationship with care-recipient, gender and education influenced wellbeing, and relationship with care-recipient, co-residence and education influenced general health; and caregiver characteristics did not influence burden. Qualitative findings suggest improved burden and wellbeing were consequences of respite and social support, rather than the exercise intervention. This study provides insight that integrating family caregiver components into community-based exercise programs may benefit PWAD and their family caregivers.
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Chow, Esther, and Sai-fu Fung. "Hope, active coping and well-being in stroke-survivors and caregivers: An actor–partner model analysis." Innovation in Aging 5, Supplement_1 (December 1, 2021): 804. http://dx.doi.org/10.1093/geroni/igab046.2961.
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Abstract Purpose: Stroke is a medical condition cause of suffering for both patients and their caregivers within the family. This paper aimed to assess the influence of the psychological construct of hope and active coping on hedonic wellbeing in patient with stroke and caregiver dyads by determining the dyadic patterns. Methods: A baseline study including 200 stroke-survivor (Age 73.63; SD=7.22) and caregiver (62.49; SD=14.44) dyads with actor–partner interdependence model (APIM) estimated by structural equation modelling with maximum likelihood estimation. Herth Hope Index (HHI), Proactive Coping Inventory (PCI) and Personal Wellbeing Index (PWI) were used to measure hope, proactive coping and wellbeing, respectively. Results: The APIM analysis revealed that both stroke patients and caregivers demonstrated double actor-only pattern. As such, stroke-survivors’ hope and active coping excreted an actor effect on their own wellbeing with beta = 0.48 (p < 0.01) and 0.16 (p < 0.01), respectively. Similarly, the caregiver also reported an actor effect between hope and wellbeing (beta = 0.84, p < 0.01) as well as active coping with wellbeing (beta = 0.37, p < 0.01). The overall SEM model also fulfilled the criteria for good model fit (χ2 (5.87), p = > 0.05, CFI = 0.98, TLI = 0.96 and RMSEA = 0.07). Conclusions: The results suggest that both stroke patients and caregivers’ hedonic wellbeing are holding actor-oriented pattern with the hope and active coping. The implications for clinical practitioners, research and theoretical development are discussed.
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Davis, Abigail Oluwadunni, Oladapo Michael Olagbegi, Kayode Orekoya, Mathew Adekunle, Olufemi Oyeleye Oyewole, Modinat Adepoju, and Oluyemisi Soetan. "Burden and quality of life of informal caregivers of children with cerebral palsy." Rev Rene 22 (May 3, 2021): e61752. http://dx.doi.org/10.15253/2175-6783.20212261752.
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Objective: to analyze the caregiver burden and the quality of life of informal caregivers of children with cerebral palsy. Methods: the cross-sectional survey involved 109 caregivers of children with cerebral palsy recruited from physiotherapy clinic at a tertiary hospital. The quality of life and caregiver burden were assessed using the Personal Wellbeing Index Scale and the Modified Caregivers’ Strain Index, respectively. Data were analysed using descriptive and inferential statistics. Results: the mean strain index and quality of life scores of the participants were 11.85 ± 5.72 and 64.68 ± 8.03 respectively. The majority (67.9%) of the caregivers had fair personal well-being, while about one-third (33.0%) had high caregiver’s strain. Child’s age (B=2.454; p<0.005) and caregivers’ occupation (B= -2.547; p=0.001) were predictors of caregiver strain. Conclusion: caring for children with cerebral palsy imposed a substantial burden on the caregivers and child’s age and caregivers’ occupation were predictor variables.
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Yuen, Eva Y. N., and Carlene J. Wilson. "The Relationship between Cancer Caregiver Burden and Psychological Outcomes: The Moderating Role of Social Connectedness." Current Oncology 29, no. 1 (December 22, 2021): 14–26. http://dx.doi.org/10.3390/curroncol29010002.
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The present study: (a) examined the extent of caregiver burden and psychological wellbeing and (b) tested whether social connectedness moderated the association between caregiver burden and psychological symptoms in caregivers of people with cancer. The cross-sectional survey study included 189 cancer caregivers (mean age = 36.19 years, standard deviation = 11.78; 80.4% female). Data were collected on caregiver burden, social connectedness, and depression and anxiety. Moderation analysis was conducted to examine the effect of social connectedness on the relationship between caregiver burden and depression and anxiety. Caregiver burden was positively associated with depression and anxiety symptoms. Controlling for significant demographic and caregiver characteristics, the moderation model showed as perceived social connectedness increased, the relationship between caregiver burden and depression decreased (β = −0.007, se = 0.004, 95% CI: −0.014, 0.000, p = 0.05). By contrast, social connectedness did not moderate the association between caregiver burden and anxiety. Findings have implications for the management of depression in cancer caregivers. Social connectedness appears to provide a protective buffer from the negative impacts of caregiving, providing increased psychological resources to manage the burden associated with caregiving, resulting in lower depression. Research on strategies to improve caregiver wellbeing through enhancing engagement with social networks in ways that improve perceived sense of connectedness with others is warranted.
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Prado, Lia, Rebecca Hadley, and Dawn Rose. "Taking Time: A Mixed Methods Study of Parkinson’s Disease Caregiver Participation in Activities in Relation to Their Wellbeing." Parkinson's Disease 2020 (April 9, 2020): 1–18. http://dx.doi.org/10.1155/2020/7370810.
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Objectives. Although many studies have shown that psychosocial interventions, such as dance classes, can improve quality of life for people with Parkinson’s disease (PD): few have addressed the role of, and potential benefits to, the caregivers in such activities. This mixed methods study explored the reasons for caregiver participation in a variety of activities and considered whether participation in, or abstention from these, affected the wellbeing of the caregivers. Method. Transcriptions of a focus group (two people with PD, two caregivers) and eight semistructured interviews (caregivers) were analysed using Grounded Theory (GT). To test the hypotheses derived from the GT, caregivers (n = 75) completed an online survey about activities they and the person they care for participated in, alongside the PDQ-Carer questionnaire, to establish the caregiver’s levels of wellbeing. Results. Qualitative findings suggested that caregivers tried to find a balance between caring for the person with PD and participating in activities to attend to their own needs. Reasons for participating in activities for people with PD included being able to socialise in an empathetic safe space, alongside engaging in physical activity that provided some respite distraction, such as dancing with others to music. Reasons for not participating included generating time for oneself and increasing the independence of the person with PD. Quantitative results suggested that most of the participants’ wellbeing was not compromised, although this was gendered: female caregivers reported lower wellbeing scores than male caregivers. Overall, 62% of caregivers participated in joint activities. Linear regression revealed a significant relationship between nonparticipation in daily activities and stress levels for female caregivers only, whereby the more independent the person with PD was, the lower the stress of the caregiver. Conclusion. This study suggests that caregivers of people with PD can find a healthy balance in terms of their own wellbeing by jointly participating in two-thirds of activities while ensuring the remaining third is time reserved for themselves.
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Beverly, Alexis, Christina Baucco, Seho Park, Matthew Schroeder, Shelley Johns, Katherine Judge, and Nicole Fowler. "THE RELATIONSHIP BETWEEN SOCIOECONOMIC DISADVANTAGE AND DEMENTIA CAREGIVER BURDEN." Innovation in Aging 6, Supplement_1 (November 1, 2022): 769. http://dx.doi.org/10.1093/geroni/igac059.2786.
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Abstract More than 16 million people provide unpaid care to someone with Alzheimer’s disease or a related dementia (ADRD) in the United States. These caregivers frequently report experiencing psychological and physical burden. Prior research shows that socioeconomic disadvantaged neighborhoods have higher rates of ADRD, but little is known about caregiver burden. We hypothesized more socioeconomic disadvantage is associated with higher caregiver burden. We performed a secondary analysis using baseline data on dementia caregivers (n=132) enrolled in the Indiana University Telephone Acceptance and Commitment Therapy for Caregivers (TACTICs) pilot trials. Mean (SD) caregiver age was 61.6 (11.6) years; 83.3% women; 78.8% white; 19.7% black. Seventy-two percent of the caregivers lived with the care recipient and 50.8% reported moderate dementia severity. A linear regression model examined the relationship between caregiver’s national Area Deprivation Index (ADI) score (ranging from 1–100 with higher scores indicating greater socioeconomic disadvantage) and caregiver burden. The following covariates were included: age, sex, race, education, shared residence with care-recipient, health status, anxiety, depression, and dementia severity of care recipient. Higher ADI was associated with lower caregiver burden (β=-0.222, p < 0.001). Caregiver burden has a significant negative relationship with ADI and dementia severity (p<-.001 and 0.046, respectively) and positive relationship with anxiety (p=0.014) controlling other covariates in the model. Although we found no support for the hypothesis, further research should examine these factors with how caregiver’s ADI may impact other psychosocial wellbeing outcomes. Discussion will highlight the need for caregivers to have access to resources that can aid them through their experience.
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M, Ardhanaari, Ashweeja N, Prashant Jain, Karthigai Priya, and Nappinnai N.R. "A Study to Assess Caregiver Burden in Parents of Children with Autism Spectrum Disorder." Journal of Evidence Based Medicine and Healthcare 7, no. 46 (November 16, 2020): 2700–2704. http://dx.doi.org/10.18410/jebmh/2020/555.
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BACKGROUND Autism is one of the most demanding types of disorders in terms of caregiver’s intervention. A significant amount of distress is always associated with a long term, pervasive intervention and attention given by the care giver. The above scenario leads to depression, adjustment disorder along with suicidal tendencies among the care givers leading to poor prognosis of the disease progress in children and emergence of stress related mental illness in the care givers. Pro-active assessment, diagnosis and management of the above among the care givers might be beneficial for both the child and the care giver along with other family members. METHODS This study was conducted in the special schools of Kancheepuram from December 2019 to February 2020. The cross-sectional study aimed to assess caregiver burden and the variations of burden with varying social and language development in parents of children with ASD (Autism Spectrum Disorder). A total of 60 parents whose children were diagnosed to have Autism Spectrum Disorders were assessed to scale the caregiver burden using Burden Assessment Schedule, and semi structured socio-demographic questionnaire. RESULTS Majority of the caregivers showed an impact on multiple areas of life. 59 % of the caregivers showed significant impact on wellbeing with 84 % feeling depressed and anxious. Lack of appreciation for care was seen in 85 % of the caregivers. Relationship with others was very much impacted in about 14 % of the caregivers. Perceived severity of illness was impacted in 53 % population. CONCLUSIONS Bringing up a child with an autism spectrum disorder is a significant chronic stressor sufficient to disrupt various areas of an adult life and also to cause mental illnesses. Early recognition and management of burden is of immense value in the wellbeing of the caregiver, more importantly in the prognosis of the child’s disorder. KEYWORDS Autism Spectrum Disorder, Caregiver Burden Assessment, Caregiver Burnout
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Quinn, Catherine, Linda Clare, and Robert T. Woods. "The impact of motivations and meanings on the wellbeing of caregivers of people with dementia: a systematic review." International Psychogeriatrics 22, no. 1 (September 22, 2009): 43–55. http://dx.doi.org/10.1017/s1041610209990810.
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ABSTRACTBackground: The majority of people in the early and middle stages of dementia are cared for at home by non-paid caregivers, the majority of whom will be family members. Two factors which could have an impact on the quality of care provided to the care-recipient are the caregiver's motivations for providing care and the meaning s/he finds in caregiving. The aim of this review is to explore the potential impact of both meaning and motivation on the wellbeing of caregivers of people with dementia. The review also explores individual differences in motivations to provide care.Methods: This was a systematic review of peer-reviewed empirical studies exploring motivations and meanings in informal caregivers of people with dementia. Four studies were identified which examined the caregiver's motivations to provide care. Six studies were identified which examined the meaning that caregivers found in dementia caregiving.Results: Caregivers' wellbeing could be influenced by the nature of their motivations to care. In addition, cultural norms and caregivers’ kin-relationship to the care-recipient impacted on motivations to provide care. Finding meaning had a positive impact on caregiver wellbeing.Conclusions: The limited evidence currently available indicates that both the caregiver's motivations to provide care and the meaning s/he finds in caregiving can have implications for the caregiver's wellbeing. More research is needed to explore the role of motivations and meaning in dementia caregiving.
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van Wijnen, Helena GFM, Sascha MC Rasquin, Caroline M. van Heugten, Jeanine A. Verbunt, and Véronique RM Moulaert. "The impact of cardiac arrest on the long-term wellbeing and caregiver burden of family caregivers: a prospective cohort study." Clinical Rehabilitation 31, no. 9 (January 9, 2017): 1267–75. http://dx.doi.org/10.1177/0269215516686155.
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Objective: The purpose was to gain insight in the functioning of caregivers of cardiac arrest survivors at 12 months after a cardiac arrest. Secondly, the course of the wellbeing of the caregivers during the first year was studied. Finally, factors that are associated with a higher care burden at 12 months after the cardiac arrest were investigated. Subjects: A total of 195 family caregivers of cardiac arrest survivors were included. Main measures: Quality of life (SF-36, EuroQol-VAS), caregiver strain (CSI) and emotional functioning (HADS, IES) were measured at two weeks, three months and one year after the cardiac arrest. Thereby, the caregiver was asked to fill out the cognitive failure questionnaire (CFQ) to evaluate their view on the cognitive status of the patient. Results: Caregiver strain was high in 16 (15%) of the caregivers at 12 months. Anxiety was present in 33 (25%) caregivers and depression in 18 (14%) caregivers at 12 months. The repeated measures MANOVA showed that during the first year the following variables improved significantly: SF-36 domains social and mental health, role physical, role emotional and vitality, caregiver strain, HADS and IES ( P<0.001). At 12 months caregiver strain correlated significantly (explained variance 63%, P=0.03) with caregiver HADS ( P=0.01), EuroQol-VAS ( P=0.02), and the CFQ ( P<0.001), all measured at 12 months after the cardiac arrest. Conclusions: Overall wellbeing of the caregivers improves during the first year up to normal levels, but caregivers with emotional problems or perceived cognitive problems at 12 months are at risk for developing a higher care burden.
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Queen, Tara L., Jonathan Butner, Cynthia A. Berg, and Jacqui Smith. "Activity Engagement Among Older Adult Spousal Caregivers." Journals of Gerontology: Series B 74, no. 7 (July 28, 2017): 1278–82. http://dx.doi.org/10.1093/geronb/gbx106.
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Abstract Objective Spousal caregiving can have strong implications for health and wellbeing given the strain and burden associated with the role. Maintaining activity engagement is important for late-life health and wellbeing, and may be a possible contributing mechanism to caregiver health and wellbeing. This paper examined longitudinal changes in activity engagement and asks how spousal caregiving status and caregiver age related to longitudinal activity engagement in a sample of older adults. Method Data from four waves of the Health and Retirement study were used to model associations between periods of being a spousal caregiver, age, and engagement in physical, social, self-care, passive, and novel information processing activities over a 6-year period. Results Caregiving status was associated with declines in physical activity engagement over time. Older age was associated with fewer physical and more self-care and passive activities. Discussion Caregivers’ declines in participation in physical activities may be an important indicator for preservation of health and management of caregiving stress.
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Jiang, Hantao, and Xueqing Wang. "HEALTHY CAREGIVER SELECTION AMONG DEMENTIA CAREGIVERS: THE ROLE OF SOCIAL SUPPORT." Innovation in Aging 6, Supplement_1 (November 1, 2022): 872–73. http://dx.doi.org/10.1093/geroni/igac059.3117.
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Abstract As of 2019, more than 4 million older adults aged 65+ in the United States are cognitively impaired, including the diagnoses of mild cognitive impairment (MCI) and dementia. Caregivers to these older adults bear significant burden, reflected as high prevalence of chronic stress and mental health problems among the caregiver population. It is thus crucial to understand the wellbeing of the caregiver population to design effective policies. Previous studies have documented survival advantage of dementia caregivers compared to non-caregiving individuals as well as other types of caregivers, namely caregivers to persons with MCI or other types of chronic conditions. However, it remains less clear how the role of social support explains dementia caregiver’s survival advantage. In this paper, we directly compare the level and type of social support between different types of caregivers, and examine to what extent the difference in social support explains the survival and health advantage of dementia caregivers compared to caregivers to persons with MCI, non-cognitive impairment chronic conditions and non-caregiving individuals. We use the 12 waves of the Health and Retirement Study and apply multivariate and survival analysis to calculate difference in age-specific hazard ratios. Our preliminary results show that dementia caregivers tend to secure stronger support from family members than caregivers to persons with MCI. Our results have potential to shed light on the empirical puzzle of healthy caregiver selection effect and have direct implications for designing effective intervention to improve health of the caregiver population.
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Vicente Ruiz, María Asunción, Carmen de la Cruz García, Ramón Antonio Morales Navarrete, Clara Magdalena Martínez Hernández, and María de los Ángeles Villarreal Reyna. "Tiredness, Care and Impact on Family Caregivers of Older Adults with Chronic Degenerative Diseases." European Journal of Investigation in Health, Psychology and Education 4, no. 2 (June 3, 2014): 151–60. http://dx.doi.org/10.1989/ejihpe.v4i2.62.
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Chronic diseases such as diabetes, hypertension, cardiovascular disease, and cancer, may limit the older adults’ ability to execute daily life activities; generating tiredness and/or overload on the caregivers. Objective: To determine the existing relationship between tiredness, the caregiver and the effects on the caregiver’s health. Method: Quantitative analytic study. The sample was assembled with 123 family caregivers and 123 older adults with a chronic degenerative disease. The sampling method was non-probabilistic. Results and Discussion: It was found association between tiredness and care’s repercussions (r=.438, p<.01), this suggest that, the higher the fatigue presented by the caregivers, higher the repercussions in their health will be (r=.546, p<.01). Also, a correlation from the care given by the familiar and the repercussions on the caregiver’s health (r=.546, p<.01), indicating that, the more extensive and complex the care given, greater the affectation this will have on the caregiver´s health. The care was related with the tiredness allows us to affirm that the more extensive and complex the care, the more tiredness is perceived by the caregiver (r=.109, p<.01). Conclusion: The caregiver’s tiredness is high; it is associated with the overload of the care and has several repercussions on the health or the wellbeing and future interdisciplinary-based interventions.
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Vicente Ruiz, María Asunción, Carmen de la Cruz García, Ramón Antonio Morales Navarrete, Clara Magdalena Martínez Hernández, and María de los Ángeles Villarreal Reyna. "Tiredness, Care and Impact on Family Caregivers of Older Adults with Chronic Degenerative Diseases." European Journal of Investigation in Health, Psychology and Education 4, no. 2 (June 3, 2014): 151–60. http://dx.doi.org/10.3390/ejihpe4020014.
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Chronic diseases such as diabetes, hypertension, cardiovascular disease, and cancer, may limit the older adults’ ability to execute daily life activities; generating tiredness and/or overload on the caregivers. Objective: To determine the existing relationship between tiredness, the caregiver and the effects on the caregiver’s health. Method: Quantitative analytic study. The sample was assembled with 123 family caregivers and 123 older adults with a chronic degenerative disease. The sampling method was non-probabilistic. Results and Discussion: It was found association between tiredness and care’s repercussions (r=.438, p<.01), this suggest that, the higher the fatigue presented by the caregivers, higher the repercussions in their health will be (r=.546, p<.01). Also, a correlation from the care given by the familiar and the repercussions on the caregiver’s health (r=.546, p<.01), indicating that, the more extensive and complex the care given, greater the affectation this will have on the caregiver´s health. The care was related with the tiredness allows us to affirm that the more extensive and complex the care, the more tiredness is perceived by the caregiver (r=.109, p<.01). Conclusion: The caregiver’s tiredness is high; it is associated with the overload of the care and has several repercussions on the health or the wellbeing and future interdisciplinary-based interventions.
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Cantu, Phillip, Joanna Chyu, Neil Mehta, and Markides Kyriakos. "CAREGIVING FOR PEOPLE WITH DEMENTIA DURING THE PANDEMIC: A SCOPING REVIEW." Innovation in Aging 6, Supplement_1 (November 1, 2022): 508–9. http://dx.doi.org/10.1093/geroni/igac059.1947.
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Abstract Background The COVID-19 pandemic has had a large impact on the roles and responsibilities of caregivers for older adults with dementia. An increasing number of studies have examined the unique challenges faced by caregivers during this time, including extended work hours, anxiety around contracting COVID-19, and adhering to public health guidelines. Informal caregivers may also face greater strain on their personal lives during lockdown. Objective: To conduct a scoping review to examine factors impacting well-being of caregivers of older adults with dementia during the first year of the COVID-19 pandemic. Method: We conducted a PubMed search using the terms “COVID-19,” “older adults,” and “caregiving” or “caregiver.” Sixty-seven papers were identified published between June 2020 and December 2021. Results All papers identified were cross-sectional and conducted after the pandemic began and prior to the availability of COVID-19 vaccines. Articles highlighted increasing burdens such as financial and physical stress, as well as worsened psychological wellbeing through increased anxiety and depression among caregivers during the pandemic. Additionally, themes of protective factors on wellbeing in the form of social connection and telehealth interventions emerged. Discussion: Limitations to our review include lack of longitudinal information on caregiver experience to better identify broad impacts on caregiver well-being. Studies not only identified new, pandemic-related risk factors for caregiver burden, but also a heightened effect of pre-existing risk factors (e.g. income, living situation, gender) on burden. Caregiver psychiatric outcomes reflect the overall population’s increase in mental illness since the start of the pandemic.
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Özkan Tuncay, Fatma, and Tülay Kars Fertelli. "Effects of the caregiver burden perceived by caregivers of patients with neurological disorders on caregiver wellbeing and caregiver stress." Perspectives in Psychiatric Care 55, no. 4 (May 28, 2019): 697–702. http://dx.doi.org/10.1111/ppc.12405.
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Kim, Steffi. "SOURCES OF STIGMA AND THEIR IMPACT ON ALASKA NATIVE ADRD CAREGIVERS' WELLBEING." Innovation in Aging 6, Supplement_1 (November 1, 2022): 49. http://dx.doi.org/10.1093/geroni/igac059.189.
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Abstract Challenges such as isolation, scarce resources, and limited knowledge of the disease are often the result of stigmatizing experiences from multiple systemic sources. No studies have investigated the impact of sources of stigma on the quality of life in Alaska Native (AN) ADRD caregivers. This exploratory, mixed-method study within a community-based participatory research framework assessed the experience of family stigma among 40 AN caregivers of people with ADRD across Alaska by administering a measure of systemic stigma and describes the impact of stigmatizing experiences on AN caregivers’ quality of life to develop preliminary data-driven stigma-reducing initiatives. AN caregivers completed the Family Stigma – Alzheimer’s Disease Scale (FS-ADS), assessing caregiver stigma, layperson stigma, and structural stigma. Quality of Life was assessed with the Goodness of Life for Every Alaska Native (GLEAN) scale. Preliminary data on structural stigma and its impact on caregiver quality of life will be presented.
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Clare, Greg, I. J. Washburn, and P. Hebert. "Spectrum Actigraphy Sleep and Caregiver Wellbeing." International Journal of Current Microbiology and Applied Sciences 5, no. 8 (August 10, 2016): 577–83. http://dx.doi.org/10.20546/ijcmas.2016.508.064.
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Hirano, Akemi. "New treatments to support caregiver wellbeing." Impact 2019, no. 3 (March 22, 2019): 18–19. http://dx.doi.org/10.21820/23987073.2019.3.18.
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Samus, Quincy M., Nancy Hodgson, and Joseph E. Gaugler. "HOME IS WHERE THE HEART IS: OPTIMIZING AND TAILORING HOME AND COMMUNITY-BASED SUPPORT FOR DEMENTIA CAREGIVERS." Innovation in Aging 3, Supplement_1 (November 2019): S549—S550. http://dx.doi.org/10.1093/geroni/igz038.2026.
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Abstract Family caregivers, often “de facto” members of the care team for persons with dementia, play a central role in ensuring safety, support, quality of life, and continuity of care. Most often, they provide this care for loved ones at home and over a long period of time, as the illness progresses and care need intensifies. This session will provide a unique understanding of potential ways to optimize support for family caregivers in provision of day-to-day care in the home by examining often-overlooked factors influential in the health and wellbeing for both caregiver and persons with dementia. Presentations will draw from three large community-based trials testing interventions to support dementia caregivers. Drs. Samus and Sloan will present on common unmet needs identified by family caregivers and explore how needs differ by disease stage and race. Dr. Fortinsky will present baseline caregiver care-related challenges in a diverse cohort of caregivers and the effects of a caregiver intervention designed to mitigate these challenges. Dr. Hodgson will present the common symptoms clusters among home-dwelling persons with dementia patients and how these are associated with caregiver distress. Dr. Jutkowitz will discuss factors influencing dementia caregiver’s willingness to pay for help at home. Findings from this session will help elucidate care needs that matter most to family caregivers in diverse community-living cohorts and how we might optimize and tailor supportive home-based interventions to target these needs and challenges.
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Freedman, Vicki A., Jennifer C. Cornman, Deborah Carr, and Richard E. Lucas. "Time Use and Experienced Wellbeing of Older Caregivers: A Sequence Analysis." Gerontologist 59, no. 5 (January 22, 2019): e441-e450. http://dx.doi.org/10.1093/geront/gny175.
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Abstract Background and Objectives The diminished wellbeing of caregivers is well documented, but studies typically draw upon coarse measures of time use and thus provide limited understanding of the role of specific care activities in the daily lives of care providers. This study uses time diary data to explore whether there are signature care patterns throughout the day and whether these care patterns have implications for caregivers’ experienced wellbeing. Research Design and Methods Using a national sample of 511 time diaries from older caregivers in the Disability and Use of Time supplement to the Panel Study of Income Dynamics, we examine minutes of care provided on the prior day, overall and for four broad care categories (household, personal care, transportation, and visiting), and patterns of care over the day, the latter based on sequence and cluster analysis. Results Older caregivers spend on average 2.3 hr providing care to another adult on care days. Caregiving follows a roller-coaster pattern over the day, peaking at mealtimes. Sequence analysis suggests five distinctive caregiving patterns, which vary by both demographic characteristics of the caregiver (gender, work status) and care arrangement type (relationship to recipient, whether sole caregiver to recipient). The 40% who provide only marginal assistance of about 1 hr report lower experienced wellbeing than the 28% who provide sporadic assistance with a mix of activities for about 2 hr. Discussion and Implications A substantial share of older caregivers provides only 1 hr of assistance on a given day but appears to be at risk for reduced wellbeing. Better understanding of the reason for their marginal involvement and reduced wellbeing is warranted.
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Feldman, Rhonda, Mary Chiu, Andrea Lawson, and Joel Sadavoy. "Evaluating Caregiver Risk: The Dementia Caregiver Interview Guide." Psych 3, no. 4 (September 25, 2021): 552–61. http://dx.doi.org/10.3390/psych3040036.
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Objectives: Family and other informal caregivers of individuals with dementia can be at increased risk for a significant decline in wellbeing or their ability to continue to provide care. There is extensive literature on the multifactorial elements contributing to risk, but frontline practitioners may be uncertain how to apply their knowledge of risk to an assessment of individual caregivers during clinical encounters. We developed a new one-page guided interview tool (the Dementia Caregiver Interview Guide, or DCIG) to guide practitioners to: (1) systematically assess known factors associated with high caregiver risk in a clinical interview format and (2) concisely document their judgement regarding risk of decompensation arising from caregiver stress. This semi-structured interview format collects detailed information while promoting a collaborative communication process. This study evaluated the validity of risk-assessment using the DCIG. Methods: A convenience sample of 50 caregivers was recruited during routine intake at the Reitman Centre at Sinai Health in Toronto, Canada. Risk was assessed using both the DCIG and the Caregiver Risk Screen (CRS). Total scores on the two tools were compared to establish concurrent and discriminant validity for the DCIG. Results: The DCIG correlated positively with the CRS (Spearman’s rho = 0.737; p < 0.001) and identified caregivers at risk at a moderate level of agreement with the CRS (Cohen’s Kappa = 0.559). Conclusions: The DCIG allows clinicians to efficiently identify caregivers’ level of risk for functional and emotional decline or decompensation in a client-centered, naturalistic manner.
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Topping, Carlisle, Ashley Nelson, Jamie M. Jacobs, Joseph A. Greer, Jennifer S. Temel, and Areej El-Jawahri. "Relationship between caregiver burden and psychological distress among stem cell transplant (SCT) recipients prior to transplant." Journal of Clinical Oncology 38, no. 15_suppl (May 20, 2020): 12120. http://dx.doi.org/10.1200/jco.2020.38.15_suppl.12120.
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12120 Background: SCT is a potentially curative therapy for patients with hematologic malignancies that involves prolonged hospitalization, intensive follow-up, and a considerable risk of morbidity and mortality. Family and friends caring for SCT recipients experience substantial caregiving burden as they prepare for SCT. Previous research demonstrates caregiver distress is highest pre-transplant and is comparable to or higher than patient-reported distress. However, the extent of this distress and its relationship to certain domains of quality of life (QOL) and caregiving burden is currently unknown. Methods: We conducted a secondary analysis of cross-sectional data from two supportive care studies focused on caregivers of SCT recipients. Caregivers completed the Hospital Anxiety and Depression Scale (HADS) and the CareGiver Oncology QOL questionnaire to assess their psychological distress and QOL prior to SCT. Scores >8 on the HADS anxiety and depression subscales indicated clinically significant symptoms. We selected eight domains from the CareGiver Oncology QOL questionnaire including social support, physical wellbeing, self-efficacy, coping, leisure time, financial stability, private life concerns, and caregiving burden. Multivariate regression models adjusted for age, sex, caregiver relationship, and SCT type were used to examine associations between these domains and caregivers’ anxiety and depression symptoms. Results: A total of 193 caregivers (age M= 57 years, 70% female, 52% allogeneic transplant) were enrolled with a majority caring for their spouse (80%), parent (8%) or child (5%). Overall 47% and 16% of caregivers reported clinically significant anxiety and depression symptoms, respectively. Low social support, physical well-being, coping and leisure time as well as high caregiver burden, private life concerns and financial distress were associated with both caregiver anxiety and depression symptoms (p < .05). Low self-efficacy was associated with higher anxiety symptoms (p < .05). Conclusions: Caregivers of SCT recipients experience substantial anxiety and depression symptoms prior to SCT. Impairments across multiple QOL domains are associated with caregiver’s psychological distress. Psychosocial interventions designed to improve coping, reduce caregiving burden, and enhance QOL are needed for caregivers prior to transplant.
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Boamah, Sheila A., Vanina Dal Bello-Haas, and Rachel Weldrick. "The Cost of Isolation." Social Science Protocols 4 (November 21, 2021): 1–9. http://dx.doi.org/10.7565/ssp.v4.6190.
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Background: Recent research has found that family (e.g., informal, unpaid) caregivers to those in long-term care can experience significant risk of social isolation, a harmful social outcome linked to poor health and wellbeing. For many, the COVID-19 global pandemic has been a time marked by challenges that have exacerbated existing risk of social isolation and has likely impacted mental health and wellbeing among caregivers. As such, this paper outlines a protocol to investigate the extent to which the COVID-19 pandemic has impacted the psychological health and well-being of family caregivers of people living in residential long-term care.
Methods/Design: A descriptive phenomenological design and photovoice methodology will be used alongside focus groups to capture the perspectives and voices of 15-20 family caregivers. Data will be analyzed thematically, and themes will be developed collaboratively alongside participants. A secondary analysis will be guided by a cumulative inequality lens to consider how the COVID-19 pandemic has differentially affected caregivers.
Discussion: The results will fill a significant gap in the existing literature on caregiver isolation during this pandemic and inform the development and/or refinement of caregiver supports.
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Bremmers, Leonarda G. M., Leona Hakkaart-van Roijen, Eleonora S. Gräler, Carin A. Uyl-de Groot, and Isabelle N. Fabbricotti. "How Do Shifts in Patients with Mental Health Problems’ Formal and Informal Care Utilization Affect Informal Caregivers?: A COVID-19 Case Study." International Journal of Environmental Research and Public Health 19, no. 24 (December 7, 2022): 16425. http://dx.doi.org/10.3390/ijerph192416425.
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(1) Background: This study investigated how potential shifts in patients’ formal and informal care utilization during the COVID-19 pandemic impacted their informal caregivers in terms of their subjective burden, psychological wellbeing, and happiness. (2) Methods: A retrospective cohort study design was employed for a panel of Dutch informal caregivers of persons with mental health problems (n = 219) in June 2020. Descriptive statistics and differences between means were determined for the patients’ informal and care utilization and informal caregivers’ subjective burden, happiness, and psychological wellbeing. Three mediation analyses were conducted using the PROCESS macro. (3) Results: Informal caregivers reported significantly worse happiness and subjective burden scores during the COVID-19 pandemic compared with before the lockdown. There were minimal shifts in patient’s care utilization reported, with the exception of a decrease in significant emotional and practical support provided by the informal caregiver. In the mediation analyses, there was not a significant indirect effect of shifts in patients’ formal care utilization on informal caregivers’ subjective burden, psychological wellbeing, and happiness through shifts in patients’ informal care utilization. (4) Discussion and conclusion: Whilst we found that shifts in patients’ care utilization during the first wave of the pandemic did not affect the informal caregiver in the short term, it is unclear what the long-term impact of the pandemic might be on informal caregivers. More research should be conducted to understand the implications of short- and long-term impact of substitution on informal caregivers of persons with mental health problems, with special consideration of the COVID-19 context and uptake of e-health technology.
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Parmar, Jasneet, Lisa Poole, Sharon Anderson, Pollard Cheryl, Wendy Duggleby, Lesley Charles, Suzette Brémault-Phillips, and Jayna Holyroyd-Leduc. "Co-Designing Caregiver-Centered Care: Training the Health Workforce to Support Family Caregivers." Innovation in Aging 4, Supplement_1 (December 1, 2020): 15–16. http://dx.doi.org/10.1093/geroni/igaa057.051.
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Abstract Family caregivers [FCGs] provide over 80% of the care for people with dementia, chronic illness and impairments. Despite evidence of their contributions and consequences of caregiving, support for FCGs has not been a health system priority. Our innovative solution, to reduce caregiver distress and support caregivers’ wellbeing, is to educate the health workforce in a meaningful manner based on evidence. We validated Caregiver-Centered Care Core Competencies required to address the gap between what FCGs report they need and preparation of healthcare providers to meet those needs. This competency-based education will prepare healthcare providers to effectively identify, engage, assess, and support FCGs, and address the inconsistent system of supports for FCGs. We co-designed our Caregiver Centered Care Education using effective practices for dementia education for health workforce and co-design. We engaged over 60 multi-level, interdisciplinary stakeholders with expertise in health workforce education, frontline healthcare, dementia care, health policy, and family caregiving. We ensured that we included FCGs of people living with dementia. The teaching/learning resources include competency-aligned educational modules, multimedia resources, and facilitators guide. As the hallmark of effective education is content relevant to learners’ needs and contexts, our education is designed flexibly, to be tailored to settings and learners. We are pilot testing the Caregiver-Centered Care Education, for acceptability and effectiveness, in five contexts: primary care, acute care, homecare, supportive living, and long-term care. Our education will support Caregiver-Centered Care in all settings providing dementia-related care. Health workforce support will be essential to maintain FCG wellbeing and sustain family caregiving.
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Gyapay, Julia, Shannon Freeman, and Donna Flood. "An Environmental Scan of Caregiver Support Resources Provided by Hospice Organizations." Journal of Palliative Care 35, no. 3 (December 15, 2019): 135–42. http://dx.doi.org/10.1177/0825859719883841.
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Background: Informal caregiver support programs offered by hospice organizations support the health and wellbeing of clients and caregivers. However, an understanding of the best practices for informal caregiver support programs currently undertaken across Canada remains unknown, particularly across the province of British Columbia. Aim: The aim of the present study was to describe what existing resources and supports are provided by hospice organizations for informal caregivers of persons who are nearing end of life or who are recently bereaved in British Columbia, Canada. Methods: In this descriptive study, two thirds of hospice organizations (N = 42/66; 26 urban, 16 rural) participated in a semi-structured telephone interview focused on informal caregiver support programs. All interviews were recorded, transcribed and analyzed thematically and descriptive statistics were employed. Findings: While no one-size-fit-all caregiver support program emerged as a gold standard across all hospice organizations, nearly two thirds (n = 26/42) offered one or more informal caregiver support programs. Four categories of caregiver support programs emerged from the data analysis, including companioning, bereavement and grief supports, education and service supports, and respite for caregivers. Conclusion: Caregiver support programs are a valuable service provided by some but not all hospice organizations across British Columbia, Canada. Future studies are needed to determine best methods for hospice organizations to formally assess caregivers’ needs and to determine the success and effectiveness of such programs in support of program expansion and evaluation.
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Sánchez-Pérez, Alicia, Daniel Mendialdua-Canales, Miriam Hurtado-Pomares, Paula Peral-Gómez, Iris Juárez-Leal, Cristina Espinosa-Sempere, Paula Fernández-Pires, et al. "The ATENción Plena en Enfermedad de Alzheimer (ATENEA—Mindfulness in Alzheimer’s Disease) Program for Caregivers: Study Protocol for a Randomized Controlled Trial." Healthcare 10, no. 3 (March 15, 2022): 542. http://dx.doi.org/10.3390/healthcare10030542.
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A person affected by Alzheimer’s disease (AD) gradually loses the ability to perform activities of daily living and becomes dependent on caregivers, thereby having a negative impact on the caregivers’ quality of life. There is evidence that suggests that interventions aimed at caregivers, such as mindfulness, may be effective at reducing this burden and emotional issues, such as depression and anxiety, and improving their quality of life. However, there is a lack of consistency in the findings and conclusions remain tentative. In addition, as neuropsychiatric symptoms (NPSs) of AD are major determinants of the caregiver’s burden, these interventions should examine the relationship between these symptoms and caregiver outcomes. Importantly, to improve the design of therapeutic interventions for caregivers and complement the treatment of AD, aspects related to occupational performance and the participation of people with AD and their caregivers should also be considered. Therefore, this study will aim to examine first, the effects of a mindfulness-based program designed for caregivers on NPSs of AD and caregivers’ anxiety and depression; second, the effects of this program on patients’ functional capacity, cognitive performance, executive functions, and quality of life, and on caregivers’ burden, quality of life, occupational balance, executive functions, psychological wellbeing, and self-compassion. We believe that the findings of this study will have significant implications for future healthcare strategies focused on improving the quality of life and wellbeing of caregivers.
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Basilious, Amy, Steven Villani, Hyunsoo Jang, Karina M. Kaberi, and Monali S. Malvankar-Mehta. "Quality of life and caregiver burden in pediatric glaucoma: A systematic review." PLOS ONE 17, no. 10 (October 26, 2022): e0276881. http://dx.doi.org/10.1371/journal.pone.0276881.
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Pediatric conditions can lead to significant caregiver burden and poor quality of life (QoL). This systematic review describes research relating to caregiver burden and QoL of caregivers of pediatric glaucoma patients. A systematic database search of Embase, Medline, PsycINFO, CINAHL, Web of Science, and the three journals within the Association for Research in Vision and Ophthalmology (ARVO) was conducted in October 2021. Publications underwent abstract and full-text screening and were included if they reported pediatric caregivers’ QoL using quantitative or qualitative methods. Review articles, publications not in English, and articles focusing on adult glaucoma patients were excluded. Studies then underwent risk of bias assessment and data extraction. Of the 105 publications identified, 8 publications with 667 participants were included in the review. Studies indicated significantly higher burden and poor QoL in caregivers. Female sex, lower education level, lower income, and working status of caregivers were associated with poorer QoL and greater burden. Additionally, more severe and longer duration of the child’s disease negatively impacted these measures of caregiver wellbeing. Additionally, studies found significant improvement in caregiver QoL after patients underwent surgery with combined trabeculotomy-trabeculectomy. In conclusion, few studies have investigated the impact of pediatric glaucoma on caregivers. This review of the existing studies found poor QoL and high levels of caregiver burden within this population. Given the lifelong nature of pediatric glaucoma, there is a need for further longitudinal research focusing on the caregivers of these pediatric patients. Long-term follow-up would allow for a greater understanding of how caregiver QoL changes over the course of the disease.
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Lee, Jeong Eun, and Natasha Peterson. "DISRUPTED ACTIVITIES AND CAREGIVERS RESILIENCE: LONGITUDINAL PATTERNS AND ASSOCIATIONS." Innovation in Aging 6, Supplement_1 (November 1, 2022): 92. http://dx.doi.org/10.1093/geroni/igac059.364.
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Abstract PurposeRelatives are often caregiving for patients with advanced cancer and carry a heavy burden. Self-care and resilience-building activities offer building blocks to enhance their wellbeing and burden-bearing capacity. This study assessed the longitudinal patterns of disrupted activities of caregivers and their association with resilience reported by caregivers. MethodsData came from the National Study of Caregiving, a nationally representative study of caregivers. We analyze outcomes for caregivers for three waves of NHAT (2011-2017), estimating associations of disrupted activities and positive appraisals on 1) caregiving burden 2) resilience. Caregivers reported positive appraisals and the number of activities that have been interrupted due to their caregiving responsibilities. ResultsMultilevel models with heterogeneous within-person variance were fit to test the hypotheses on associations between disrupted activities, positive appraisals, and fluctuations in resilience and caregiving burden. Our analysis confirmed increasing disrupted activities among caregivers over time. When interrupted activities were higher than average, caregivers reported lower levels of resilience and higher levels of caregiving burden, suggesting that disrupted activities can contribute to caregivers. The reverse pattern was found for positive appraisals. ConclusionMore positive appraisals and lower levels of disrupted activities were associated with lower caregiver burden and higher levels of caregiver resilience. This study points to the critical value that caregiver self-care and positive appraisals are essential to bolster caregiver resilience and counteract caregiver burden. Future studies should illuminate the causal relation. This study will broaden our understanding of caregivers' self-care needs and provide practical implications for supporting caregivers.
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Richter, Linda M., Tamsen J. Rochat, Celia Hsiao, and Thembelihle H. Zuma. "Evaluation of a Brief Intervention to Improve the Nursing Care of Young Children in a High HIV and AIDS Setting." Nursing Research and Practice 2012 (2012): 1–8. http://dx.doi.org/10.1155/2012/647182.
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The HIV epidemic in South Africa is putting great strain on health services, including the inpatient care of young children. Caregivers and young children (107 pairs) and 17 nurses participated in an intervention to improve the care of young children in hospital in a high HIV and AIDS setting. The intervention addressed caregiver expectations about admission and treatment, responsive feeding, coping with infant pain and distress, assistance with medical procedures, and preparation for discharge and home care. Following a preparatory and piloting phase, measures of nurse burnout, caregiver physical and emotional well-being, and caregiver-child interaction were made before and after intervention. No changes were found between before and after intervention on assessments of caregiver wellbeing. However, mothers in the postintervention phase rated nurses as more supportive; mother-child interaction during feeding was more relaxed and engaged, and babies were less socially withdrawn. While the intervention proved useful in improving certain outcomes for children and their caregivers, it did not address challenging hospital and ward administration or support needed by caregivers at home following discharge. To address the latter need, the intervention has been extended into the community through home-based palliative care and support.
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Milios, Athena, Patrick McGrath, and Hannah Baillie. "A Weekly, Evidence-Based Health Letter for Caregivers (90Second Caregiver): Usability Study." JMIR Formative Research 4, no. 2 (February 12, 2020): e14496. http://dx.doi.org/10.2196/14496.
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Background Informal caregivers are family members or close friends who provide unpaid help to individuals with acute or chronic health conditions so that they can manage daily life tasks. The greatest source of health information is the internet for meeting the needs of caregivers. However, information on the internet may not be scientifically valid, it may be written in language that is difficult to read, and is often in very large doses. 90Second Caregiver is a health letter whose aim is to disseminate knowledge to caregivers in a user-friendly, weekly format, in order to improve their wellbeing. Objective The main objective was to test a sample of 90Second Caregiver health letters in order to assess their usability and to optimize the design and content of the health letters. Methods Usability research themes were assessed using semi-structured phone interviews, incorporating the Think Aloud method with retrospective questioning. Results Usability was assessed in the context of five main themes: understandability and learnability, completeness, relevance, and quality and credibility of the health letter content, as well as design and format. Caregivers generally provided positive feedback regarding the usability of the letters. The usability feedback was used to refine 90Second Caregiver in order to improve the design and content of the series. Based on the results of this study, it may be of maximum benefit to target the series towards individuals who are new to caregiving or part-time caregivers, given that these caregivers of the sample found the letters more useful and relevant and had the most positive usability experiences. Conclusions The findings assisted in the improvement of the 90Second Caregiver template, which will be used to create future health letters and refine the letters that have already been created. The findings have implications for who the 90Second Caregiver series should be targeting (ie, newer or part-time caregivers) in order to be maximally impactful in improving mental health and wellbeing-related outcomes for caregivers, such as self-efficacy and caregiving knowledge. The results of this study may be generalizable to the examination of other electronic health information formats, making them valuable to future researchers testing the usability of health information products. In addition, the methods used in this study are useful for usability hypothesis generation. Lastly, our 90Second delivery approach can generate information useful for a set of similar products (eg, weekly health letters targeted towards other conditions/populations).
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Starr, Lauren, Karla Washington, Kyle Pitzer, George Demiris, and Debra Parker Oliver. "POOR SLEEP COMMON AMONG HOSPICE FAMILY CAREGIVERS AND ASSOCIATED WITH WORSE CAREGIVER HEALTH." Innovation in Aging 6, Supplement_1 (November 1, 2022): 697–98. http://dx.doi.org/10.1093/geroni/igac059.2555.
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Abstract Over 1.2 million hospice family caregivers in the United States are at risk for interrupted, insufficient sleep due to overnight caregiving responsibilities, anxiety or intrusive thoughts, and inadequate caregiving support. Insomnia contributes to health inequities yet is underrecognized and undertreated. The prevalence of insomnia among hospice family caregivers is not well understood. The purpose of this preliminary study was to describe insomnia prevalence among hospice family caregivers and identify factors that differentiate caregivers with sleep difficulties from caregivers without sleep difficulties. This observational study included 57 hospice family caregivers of cancer patients enrolled in a randomized clinical trial for caregivers [NCT02929108]. Results showed 49.1% of hospice family caregivers had subthreshold insomnia to severe clinical insomnia, as measured by the Insomnia Severity Index. Although social determinant of health variables did not differ based on caregiver insomnia status, caregivers with insomnia (5.0, median) self-rated their physical health significantly lower than caregivers without insomnia (8.0, median) (P< 0.001). Directionally, the distance a caregiver lived from a care-recipient also differed by insomnia status, with 70% of caregivers with insomnia co-residing compared to 46% of caregivers without insomnia. Overall, 78.9% of hospice family caregivers had no caregiving support; anxiety and depression were highly prevalent. Clinicians should screen hospice family caregivers for sleep disorders and seek to improve caregiver health by offering sleep interventions tailored to the specific needs of hospice family caregivers and connecting caregivers to health resources for their own wellbeing. Policy makers must expand hospice benefits to include additional caregiver support.
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Wilks, Scott, Wanda Spurlock, Sandra Brown, Jennifer Geiger, Sarah Choate, Katherine Kirsch, Alisha Thompson, and Cassie Slaton. "Spiritual Support Among African American and Caucasian ADRD Caregivers: A Risk and Resilience Study." Innovation in Aging 5, Supplement_1 (December 1, 2021): 8–9. http://dx.doi.org/10.1093/geroni/igab046.031.
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Abstract Research shows African Americans at greater risk of developing Alzheimer’s disease and related dementias (ADRD) compared to Caucasians, suggesting African American ADRD caregivers are rising in numbers at a greater rate than Caucasian counterparts. A recent study indicated spiritual wellbeing differences among these caregiver groups. Using a quasi-follow-up of members of a larger caregiver sample, the purpose of this study was to test spiritual support as a moderator via a risk-and-resilience framework. Secondary data analysis from a sample of 691 ADRD caregivers examined data on demographics and standardized measures of spiritual support, caregiver burden, and psychological resilience. One-third of the sample reported as African American. Resilience negatively regressed, though not significantly, on caregiving burden among both groups. Spiritual support positively, significantly impacted resilience among both groups, slightly stronger among African Americans. Spiritual support did not significantly moderate risk with either group. Implications for professional healthcare practice are discussed.
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Palmer, Alan, Rowena Gomez, Eric Taylor, Eliot Steer, and Megan Frank. "Ethnicity Moderating the Relationship of Cognition Function of Patients With Dementia on Caregiver Depression." Innovation in Aging 4, Supplement_1 (December 1, 2020): 329. http://dx.doi.org/10.1093/geroni/igaa057.1055.
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Abstract The purpose of this study was to see if ethnicity (African-American and Caucasian) moderates the predictive effects of cognition functioning in patients with dementia on caregivers’ severity of depressive symptoms. Secondary data analyses were conducted from Resources for Enhancing Alzheimer’s Caregiver Health (REACH II; 2001-2004). The participants consisted of 214 African American and 321 Caucasian participants (N = 535). The assessment battery included the Center for Epidemiologic Depression Scale (CES-D) to measure depression severity, Mini-Mental State Exam (MMSE) to measure level of cognitive function, and demographic questionnaire to gain information about caregivers and care-recipients. ANOVAs and ANCOVAs were used to examine ethnic group differences in care-recipient cognitive functioning in predicting caregiver depression. Caucasian caregivers reported significantly higher levels of depression and care-recipients’ cognitive function compared to African American caregivers, ps<.05. A custom ANCOVA indicated a significant interaction between ethnicity and care-recipient cognitive functioning on caregiver depression with greater effects of care-recipient cognitive function on caregiver depression for the African American caregivers than for the Caucasian caregivers, p=.02. Descriptively, the depression severity for the Caucasian caregivers remained relatively high across levels of care-recipients’ cognition. The findings indicated that ethnicity moderated the effects of care-recipient cognitive functioning on caregiver self-report of depressive symptoms. These findings suggest greater resiliency in African -American caregivers supporting their dementia or dementia-related condition care-recipients (Dias et al., 2015). These findings support the need to develop cultural specific interventions to better support the wellbeing of caregivers of care-recipients with dementia or dementia-related conditions.
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Watson, Barbara J. "Communication and burden in dementia care." International Journal of Healthcare 4, no. 1 (December 12, 2017): 5. http://dx.doi.org/10.5430/ijh.v4n1p5.
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This paper provides an integrated discussion of the literature that addresses the effect of communication strategies on dementia care and caregiver burden. With the complexity and multiple symptoms associated with dementia, caregivers are exposed to increased burden which can affect their own health and wellbeing. Communication has been found to be a key to reducing burden and improving the quality of life for the person with dementia (PWD) and their caregiver. The literature review examines current and previous literature in order to acknowledge and synthesize the existing work done, and to identify areas for future research. The material was drawn from three databases; the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed and PsycINFO. The literature search was restricted to relevant studies published in English and available through electronic sources between 2000 and 2017. The search yielded 22 studies. Fourteen studies met the inclusion criteria. These studies focused on the use of communication strategies within the context of caregiver burden in dementia care. The qualitative and quantitative studies addressed verbal and nonverbal techniques used to guide caregivers in their communication with PWD and to decrease caregiver burden. The results of the review illustrate the importance of using effective communication techniques for PWD. It shows that using specific strategies improves relationships between caregivers and PWD and effective communication techniques reduce caregiver burden. The importance and significance of these findings indicate the need for further research in the effects that communication have on dementia and caregiver burden.
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Hu, Mengyao, and Sarah Patterson. "LATE-LIFE CARE FOR OLDER ADULTS: FINDINGS FROM NHATS AND NSOC." Innovation in Aging 6, Supplement_1 (November 1, 2022): 418. http://dx.doi.org/10.1093/geroni/igac059.1640.
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Abstract With the aging of the U.S. population, caregiving has become an emerging public health issue that affects the health and quality of life for millions of care recipients and their caregivers. An increasing number of older adults rely on their family caregiver networks and home-based clinical services for physical, social and emotional support. Caregiving plays an important role in health and wellbeing of older adults both in daily life and in the context of health care, e.g., in post-acute caregiving after hospital discharge. There is a growing interest in identifying caregivers in greatest need of support and developing programs and interventions to help these caregivers. This symposium describes caregiver network and examines the roles of the caregiver network and family caregiving support on care recipients’ and caregivers’ quality-of-life outcomes using the National Health and Aging Trends Study (NHATS) and linked National Study on Caregiving (NSOC). This symposium will 1) evaluate typologies of the structures and compositions of caregiver network and examine their effects on care recipients’ well-being; 2) describe findings on associations between caregiving network and caregiver supports with unmet needs among older adults; 3) describe the role of unpaid caregivers after hospital discharge; 4) evaluate effects of family caregiving support in facilitating the use of home-based clinical services by older adults; 5) examine the effects of family disagreement on caregivers’ emotional difficulty and overload in dementia caregiving. Together, these presentations suggest important public health implications for research, policy and practice for improving late-life caregiving.
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Wright, Kathy, Eunjung Ko, Karen Moss, Tara O'Brien, Loren Wold, and Karen Rose. "A Systematic Review of Self-Care Interventions for African American Family Caregivers." Innovation in Aging 5, Supplement_1 (December 1, 2021): 352. http://dx.doi.org/10.1093/geroni/igab046.1369.
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Abstract African Americans (AA) family caregivers provide the bulk of unpaid care to persons living with dementia (PLWD). This role leaves little time for the adoption of self-care behaviors—critical to the prevention and management of chronic diseases. In this systematic review, we appraise caregiver self-care interventions that include AA caregivers of PLWD. PubMed, CINAHL, PsycINFO, Cochrane, and Embase databases were searched. Terms included AA/Black, self-care, caregiving, lifestyle, intervention, psychological stress, and faith/community. We initially found 250 references and after application of exclusion criteria and removal of redundant references, 18 articles were analyzed. Most interventions focused on impacting levels of caregiver burden, depression, physical activity, anxiety, or wellbeing. Psychoeducation, physical activity, and spiritually-focused interventions were most effective in improving outcomes in caregivers. Future studies should examine the impact of interventions on the prevention and management of chronic disease in AA caregivers of PLWD.
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Turner, Ben, Jennifer Fleming, Julie Parry, Monique Vromans, Petrea Cornwell, Cassandra Gordon, and Tamara Ownsworth. "Caregivers of Adults With Traumatic Brain Injury: The Emotional Impact of Transition From Hospital to Home." Brain Impairment 11, no. 3 (December 1, 2010): 281–92. http://dx.doi.org/10.1375/brim.11.3.281.
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AbstractPrimary Objective:To explore levels of depression, anxiety, stress and strain symptomatology experienced by caregivers of adults with traumatic brain injury (TBI) during the phase of transition from hospital to home.Research Design: Prospective study with data collected at three time-points: pre-discharge, 1-month post-discharge, and 3-months post-discharge.Methods and Procedures: Twenty-nine caregivers of adults with TBI (mean age 48 years), recruited on patient discharge from rehabilitation, completed the Caregiver Strain Index and the Depression, Anxiety and Stress Scale at the three time points.Results: Pairedttests showed significantly lower levels of caregiver strain at one month compared to pre-discharge, and significantly less strain and depression symptoms at 3-month follow-up compared to pre-discharge. Non-significant reductions were observed in level of stress and anxiety across the follow-up time points. Independent groupttests found that female caregivers experienced greater strain than male caregivers at 3 months post-discharge, and caregivers who were immediate family members of the patient experienced greater anxiety than those who were spouses/partners of the patient at 1-month follow-up.Conclusions: The rate of depressive symptoms in caregivers of people with TBI was greater than the general population, and strain was prevalent during the transition period. The results suggest more specific caregiver support and preparation is needed before patient discharge from hospital, and that adequate time spent in rehabilitation is beneficial for caregiver wellbeing.
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Nasrun, Martina Wiwie S., Profitasari Kusumaningrum, Petrin Redayani, Hasya Layalia Lahino, Fithriani Salma Mardhiyah, Amadeo D. Basfiansa, and Nindya Nadila. "Relationship Between Quality of Life of People with Dementia and Their Caregivers in Indonesia." Journal of Alzheimer's Disease 81, no. 3 (June 1, 2021): 1311–20. http://dx.doi.org/10.3233/jad-201550.
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Background: Caregivers, as one of the most important roles in caring for a person with dementia, have a challenging task. Therefore, maintaining the quality of life (QoL) of caregivers is an integral part of dementia care. Objective: To explore the relationship between the QoL of people with dementia and their caregivers in Indonesia. Methods: This is a cross-sectional study using binary correlations to analyze the relationship between people with dementia and caregivers’ QoL. Conducted in Cipto Mangunkusumo Hospital in Jakarta, the subjects were 42 people diagnosed with dementia according to the PPDGJ-III (adapted from the ICD 10) and 42 primary caregivers with at least 6 hours duration of caregiving per day. The QoL of people with dementia was measured by EuroQol-5D and VAS EQ-5D, while severity of dementia was measured by MMSE. Caregivers underwent an interview using WHO Quality of Life Instrument (WHOQOL-BREF) and NPI. Results: Most caregivers were women, aged 40–70 years old. The study found caregivers’ QoL environmental domain strongly correlated with people with dementia’s QoL (r = 0.839). Severity of dementia had a strong correlation with caregivers’ QoL physical domain (r = 0.946). Age, duration of caregiving per day, period of care provided by caregivers, and caregiver’s distress had a strong correlation with caregiver QoL for specific domains. Conclusion: There was a strong correlation between people with dementia’s QoL and caregiver QoL, so in managing dementia, clinicians should consider caregivers’ wellbeing as an essential part significantly affecting the quality of elderly care improvement.
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Liu, Ruotong, Iris Chi, and Shinyi Wu. "IMPACTS OF CAREGIVING ON WELL-BEING AMONG SPOUSAL CAREGIVERS TO OLDER ADULTS USING COARSENED EXACT MATCHING." Innovation in Aging 6, Supplement_1 (November 1, 2022): 696. http://dx.doi.org/10.1093/geroni/igac059.2550.
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Abstract Spousal caregivers to older adults may be at increased risks of negative health outcomes because they are also dealing with their own aging and health issues. Estimating the impacts of caregiving without controlling for caregivers’ own aging and aging-related health decline could exaggerate the negative health consequences of caregiving, whereas focusing on caregivers only could face the risk of selection bias where healthier individuals enter and/or remain in caregiving. In this study, we used coarsened exact matching to compare outcomes in wellbeing between spousal caregivers and spousal non-caregivers. Pooled panel data from Wave 8 to Wave 13 in the Health and Retirement Study was utilized with two consecutive waves of data for each spousal caregiver. The sample included 203,162 person-wave observations from 5,162 unique individuals, among whom 3,577 were spousal caregivers. Variables used for matching were classified into three categories: care obligations, the willingness to provide care, and the ability to provide care. Outcome of interest was depressive symptoms measured by CES-D 8. A total of 2,741 (81.01%) spousal caregivers were matched with 18,043 observations of spousal non-caregivers. Regression analysis indicated that being a spousal caregiver was statistically significantly associated with a 0.27 unit increase in depressive symptoms in the subsequent wave, after controlling for other potentially confounding variables such as caregiver’s race/ethnicity, length of current marriage, etc. Our results highlighted the elevated needs to address mental health among spousal caregivers, and indicated that long-term care program and policy should take into consideration the mental health among spousal caregivers.
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Santo, Elizete Aparecida Rubira do Espírito, Maria Aparecida Munhoz Gaíva, Mariano Martinez Espinosa, Dulce Aparecida Barbosa, and Angélica Gonçalves Silva Belasco. "Taking care of children with cancer: evaluation of the caregivers' burden and quality of life." Revista Latino-Americana de Enfermagem 19, no. 3 (June 2011): 515–22. http://dx.doi.org/10.1590/s0104-11692011000300010.
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Introduction: Cancer is a disease of high incidence among children and the patients need a caregiver during the treatment. Aim: to evaluate: the burden of care and quality of life (QOL) of caregivers of children/adolescents with cancer during chemotherapy treatment and relate them to each other and to the socio-demographic data and the presence and degree of signs of depression, Method: It is a cross-sectional study, with 32 caregivers. Socio-demographic, care burden (Caregiver Burden Scale) and QOL data (SF-36) were collected. Results: 87.5% of the caregivers were mothers, total score of burden 1.92±0.09 and most compromised score of the SF-36: emotional aspects (59.3), vitality (60.0), pain (60.9). There was a significant correlation between burden and mental health and vitality. Conclusion: Caregivers presented care burden and compromised aspects of QOL and possibly need interventions that will promote social and emotional wellbeing to reduce the burden, improve the quality of life QOL and consequently deliver better care.
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Gao, Xiang. "Associates of Perceived Quality of Life in Chinese Older Adults Living With Cognitive Impairment." Innovation in Aging 5, Supplement_1 (December 1, 2021): 243. http://dx.doi.org/10.1093/geroni/igab046.941.
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Abstract This study examined perceived quality of life in Chinese older adults living with cognitive impairment in a group of urban Chinese older adults and explore its associations with caregivers’ characteristics. Questionnaires were administered in person to 300 caregiver-care recipient dyads from three urban communities in mainland China in 2019. The 40-item Alzheimer’s Disease-related Quality of Life tool asked caregiver respondents to indicate care recipients’ life conditions. Higher levels of caregiving burden (β = -0.19, p < 0.01) and more depressive symptoms (β = -0.19, p < 0.01) amongst caregivers were significantly associated with lower quality of life of care recipients. The results suggested that reducing caregivers’ burden and depressive symptoms are essential to promote quality of life of care recipients. Formal support from health professionals, service organizations, and communities are urgently called for to promote the wellbeing of Chinese families affected by cognitive impairment.
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Lou, Vivian, Daniel W. L. Lai, Daniel Fu-Keung Wong, Doris Yu, Shuangzhou Chen, and Reynold Leung. "The Generational Impact on Meaning Making and Well-being of Adult Children Caregivers in Dementia Caregiving." Innovation in Aging 4, Supplement_1 (December 1, 2020): 908. http://dx.doi.org/10.1093/geroni/igaa057.3341.
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Abstract Children caregivers contributed significantly to care and support dementia parents globally. In the caregiving journey, making sense of providing care plays significant role in their caregiving journey. In an ageing society such as Hong Kong, different generations of children caregivers take up dementia caregiver roles. We hypothesized that from studying baby boomers (BB, born in 1946-1964) and generation X (GX, born in 1965-1980), generations have impacts on their meaning making and well-being outcomes. 601 Caregivers completed a paper or online battery of questionnaires on burden (ZBI-4), mental well-being (PHQ-9), caregiving factors (ADL, IADL, caregiving hours, Positive Aspect of Caregiving; PAC) and the meaning making factors (Finding Meaning Through Caregiving; FMTC). Results showed that significant difference between caregivers from two generations. GX have significantly lower meaning made, measured by PAC affirming self and enriching life, as well as FMTC provisional meaning. While they spent less caregiving hours for the more independent care recipients, they suffered from higher burden, higher FMTC loss/powerless and worse psychological well-being (PHQ). The findings demonstrated generation X caregiver suffered from lower level of the meaning made and worse psychological wellbeing outcomes than BB caregivers. Future caregiver studies should take generational effect into account and services shall be provided in a generation-responsive approach.
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Chavarri Guerra, Yanin, Wendy Alicia Ramos-Lopez, Sofía Sánchez-Román, Paulina Quiroz, Alfredo Covarrubias-Gómez, Natasha Alcocer, Andrea Morales Alfaro, et al. "Caregiver burden of patients with advanced cancer in Mexico." Journal of Clinical Oncology 40, no. 28_suppl (October 1, 2022): 181. http://dx.doi.org/10.1200/jco.2022.40.28_suppl.181.
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181 Background: Caregivers of patients with advanced cancer often face significant physical, social, and emotional distress. In many Latin American cultures, family plays a particularly important role in the decision-making process of patients with cancer, and relatives often assume the role of unpaid caregivers. However, there is limited research about the burden associated with cancer unpaid caregiving among patients living in Latin America. We aimed to describe the profile of caregivers and to identify patient-related factors associated with caregiver burden in a third-level cancer center in Mexico City. Methods: We conducted a cross-sectional analysis of baseline data from patients with advanced cancer and their caregivers included in a multidisciplinary patient navigator-led supportive care program in Mexico City ( Te Acompañamos). At the time of enrollment in the program, caregivers completed a short version of the Zarit Burden scale and patients completed a series of screening questionnaires including assessments of quality of life (FACT-G), depression (PHQ-9), and anxiety (GAD-7). Life expectancy was calculated using the palliative performance scale (PPS). We used descriptive statistics, chi-square tests, and multivariate logistic regression analyses to understand which patient factors were associated with higher caregiver burden. Results: A total of 321 patients with advanced cancer (58% women; average age 63.3 +/- 14 years; 32.7 with hepatopancreatobiliary tumors) and 321 caregivers (67.1% women; 44% were the patient’s son/daughter; 29% were their spouses) were included. Sixty-four caregivers (20%) had a high caregiver burden (score > 16 in the Zarit scale). Caregiver burden was more common among the patients’ spouses (24.1 %) followed by brothers/sisters (23.6%). On univariate analysis, moderate/severe levels of depression (p = 0.001), moderate/severe levels of anxiety (p = 0.02), and lower PPS scores (p = 0.002) were associated with a high caregiver´s burden. Multivariate analysis showed that only PPS < 180 days was associated with increased odds of having caregiver burden (2.0; 95% CI 1.8-3.7); p = 0.02). Conclusions: A significant proportion of unpaid caregivers of Mexican patients with advanced cancer report high levels of caregiver burden, and the odds of having caregiver burden are increased when the patient has a calculated life expectancy of <6 months. These results suggest targets for future supportive care interventions to improve caregiver wellbeing in Latin American and Hispanic populations.
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Koumoutzis, Athena, and Nader Mehri. "The Impact of Caregiving Intensity and Religiosity on Spouse Caregivers’ Health and Mortality in the United States (2004–2014)." Innovation in Aging 4, Supplement_1 (December 1, 2020): 514. http://dx.doi.org/10.1093/geroni/igaa057.1658.
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Abstract Prior research has indicated that religiosity may buffer against the deleterious effects of caregiving. However, research is lacking in examining the role of religiosity and caregiving intensity in the context of caregiver wellbeing and mortality. Data come from the Health and Retirement Study (2004-2014 waves) and consisted of spousal caregivers and noncaregivers (n= 49,638 person-spells). Pearlin’s Stress Process Model (1990) informed this study to analyze how religiosity impacts caregiver self-rated health and mortality by comparing the intensity of provided care among spousal caregivers and spousal noncaregivers. This study used two indicators to measure religiosity: 1) the importance of religion in life and 2) frequency of attending religious services. Bivariate probit model was used to model the impact of caregiving intensity and religiosity on self-rated health and all-cause mortality. After controlling for sociodemographic and health covariates, results showed that only the importance of religion in life predicted a better self-rated health among high intense spouse caregivers defined by providing >=14 hours of care per week. Findings suggest religiosity may buffer the adverse effect of caregiving stress on health for high intense spousal caregivers. Development and maintenance of religiosity may enhance positive aspects of caregiving and decrease caregiver burden.
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Siegel, Elena, Ladson Hinton, Elizabeth Rice, Nilpa Shah, Vanessa McElroy, Jasmine DeGuzman Lacsamana, Heather M. Young, and Gregory A. Maynard. "AN ACADEMIC-HEALTH SYSTEM COLLABORATION TO DEVELOP A PROGRAM FOR FAMILY CAREGIVERS OF PERSONS WITH DEMENTIA." Innovation in Aging 3, Supplement_1 (November 2019): S439. http://dx.doi.org/10.1093/geroni/igz038.1647.
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Abstract Hospitalization of persons with dementia can pose specific challenges for family caregivers, with post-discharge issues in managing acute clinical care needs coupled with dementia-related care that can exacerbate caregiver fatigue and capacity. We established an academic-practice collaboration to develop an evidence-based and innovative multi-component health system-level program to support family caregivers of persons with dementia in transition from hospital to community. Using an implementation science approach aimed to decrease the gap in translation of caregiver research into practice, we co-designed the program/implementation plan as a quality improvement initiative reflecting an integration of evidence from family caregiving literature and the health system’s unique context, workflows, stakeholder perspectives, resources, and values/priorities. This paper highlights insights gained and lessons learned in establishing a successful academic-practice collaboration, including time/investment to establish a shared project vision and identify/leverage existing organizational capacity to successfully deliver a program to improve the health and wellbeing of family caregivers.
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Dionne-Odom, J. Nicholas, Wendy Demark-Wahnefried, Richard A. Taylor, Gabrielle Betty Rocque, Andres Azuero, Aras Acemgil, Michelle Y. Martin, et al. "Differences in self-care behaviors by varying levels of caregiving intensity, performance, and well-being among family caregivers of patients with high-mortality cancer." Journal of Clinical Oncology 34, no. 26_suppl (October 9, 2016): 239. http://dx.doi.org/10.1200/jco.2016.34.26_suppl.239.
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239 Background: Family caregivers of high-mortality cancer patients perform vital tasks that deter from their own self-care. We aimed to determine differences in self-care behaviors by varying levels of caregiving intensity, well-being, and performance. Methods: Cross-sectional survey conducted in community settings of 8 cancer centers in AL, FL, and TN. Two-hundred and ninety-four family caregivers of Medicare beneficiaries diagnosed with pancreatic, lung, brain, ovarian, head & neck, hematologic, or stage IV cancer completed measures of self-care behaviors, including health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, stress management, and sleep; anxiety and depression; health-related quality of life (HRQoL); caregiver competence and preparedness; and decision-making self-efficacy. Results: Caregivers averaged 66 years and were mostly female (72.8%), white (91.2%), Protestant (76.2%), retired (54.4%) and patients’ spouse/partner (60.2%). Approximately half were rural-dwellers (46.9%) and had incomes <$50,000 (53.8%). The majority provided support 6-7 days per week (71%) for > 1 year (68%). Lower self-care behavior scores were associated with longer durations, higher hours, and more days/week of caregiving and with fair or poor patient health. Worse caregiver anxiety, depression, and mental HRQoL scores were significantly associated with lower scores in every self-care subdomain (all ps < .05). Nearly a quarter of respondents reported high depression scores (23%) and 34% reported borderline or high anxiety scores. Caregivers with lower competence, preparedness, and decision-making efficacy had lower spiritual growth, interpersonal relation, and stress management scores. Conclusions: Higher caregiving intensity is associated with worse caregiver self-care. Poorer self-care in all domains is associated with worse caregiver well-being. Interventions to optimize caregiver wellbeing should target all self-care behaviors and to optimize caregiver performance should target spiritual growth, interpersonal relation, and stress management self-care behaviors.
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Tsygankova, Valeriya, Maria A. Grullon, Bobbi Woolwine, Ashley Subler, Parker Schwab, and Adriana Patricia. "550 - Caregiver Burden and Geriatric Patients Undergoing Electroconvulsive Therapy in the COVID-19 Era." International Psychogeriatrics 33, S1 (October 2021): 92. http://dx.doi.org/10.1017/s1041610221002453.
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IntroductionCaregivers are essential in providing valuable patient information to medical providers. With limited available research investigating caregiver burden among those caring for patients receiving ECT and the new life challenges presented by the COVID-19 pandemic, it is more important now than ever to take a closer look at the caregivers’ experiences.MethodsEmory’s Wesley Woods Geriatric Hospital is one of the busiest ECT services in the country with around 2000 treatments completed every year. In this chart review, researchers are looking at caregivers’ responses to the Zarit Caregiver Burden Interview. This assessment includes 22 questions assessing the caregivers’ current emotional state in order to examine the impact of the patient’s condition oncaregiver wellbeing. The score ranges from 0 (no burden) to 88 (severe burden). Other objective assessments completed with ECT patients are BDI (Beck Depression Inventory), BDI Suicide, Sheehan Disability Scale, ECCA (Electrocompulsive Cognitive Assessment), GAD-7 (Generalized Anxiety Disorder Scale), and CGI (Clinical Global Impression). The purpose of this chart review is to investigate whether the higher severity of depression in patients correlates with higher levels of caregiver burden and whether the pandemic contributed to caregiver burden.ResultsThe Zarit Caregiver Burden Interview has been administered on twelve caregivers (n=12; 6 male and 6 female), all providing care for patients currently undergoing ECT for depressive symptoms. Out of the twelve caregivers, 66.6% reported little caregiver burden, 16.6% reported mild to moderate burden, and 16.6% reported moderate to severe burden. Additional patients are being interviewed in the ECT suite and further data collected will be presented at the 2021 IPA Virtual International Congress.ConclusionAs the world adjusts to life in the COVID-19 era, caregivers face new challenges in providing care for vulnerable, at-risk populations. Caregivers of patients receiving ECT facilitate frequent COVID testing and limited visitation policies while continuing to provide care and emotional support to patients with advanced age and a mental illness. Administrating the Zarit Caregiver Burden Interview can help providers look at the degree of burden in caregivers of patients receiving ECT for depressive symptoms and provide better caregiving strategies during and post pandemic.
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Morrison, Val, Mikołaj Zarzycki, Noa Vilchinsky, Robbert Sanderman, Giovanni Lamura, Oliver Fisher, Giulia Ferraris, et al. "A Multinational Longitudinal Study Incorporating Intensive Methods to Examine Caregiver Experiences in the Context of Chronic Health Conditions: Protocol of the ENTWINE-iCohort." International Journal of Environmental Research and Public Health 19, no. 2 (January 12, 2022): 821. http://dx.doi.org/10.3390/ijerph19020821.
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Informal caregivers are those who provide unpaid care to a relative or friend with a chronic illness, disability or other long-lasting health or care need. Providing informal care in the context of chronic health conditions presents a significant global challenge. Examination of the determinants of informal caregivers’ behaviour, especially in terms of motivations and willingness to provide/receive care, is crucial to understanding the nature of caregiver and care recipient experiences. A large group of international researchers have co-operated to execute the ENTWINE iCohort-a multinational, transdisciplinary, longitudinal study incorporating intensive methods to examine caregiver experiences in the context of chronic health conditions. The aim of ENTWINE-iCohort is to investigate the broad spectrum of factors, i.e., cultural, personal, geographical, relational, psychological, and economic that may affect motivations, willingness to provide or receive care, among diverse groups of informal caregivers and their care recipients, in different countries that have different care systems. Study questionnaires will be disseminated on-line in nine countries: Germany, Greece, Ireland, Italy, Israel, the Netherlands, Poland, Sweden, and the UK. Cross-sectional and longitudinal multivariate analysis, including intensive longitudinal and dyadic data analysis will be applied to examine the relative contribution of the above factors to caregiver or care recipient wellbeing.