Portrait of a Caregiver: Ethnodrama Development and Its Influence on Caregiver Well-Being.
Ontology highlight
ABSTRACT: Background and objectives
The majority of long-term care needs are placed upon family members who often receive minimal support. In this study, we collaborate with family caregivers to create an ethnodrama about their experience and assess outcomes of participation, including caregiver well-being.Methods
Participants met over 4 months to discuss their roles as informal caregivers. Discussions were analyzed in a two-phase process and themes were developed into a script. Member checks included script review and revisions, culminating in viewing a professional performance of the play followed by a post-performance discussion and reflection. Data were gathered at six timepoints to assess caregiver well-being and longitudinal analysis was used to assess change during the course of the intervention.Results
Twenty-two caregivers completed intervention activities. Participant reactions to the process evolved overtime, from an initial hesitance about what individuals had to offer leading to an acknowledgement of feeling heard and a desire to help others. Caregivers had high levels of burden and positive perceptions towards caregiving. Those with high levels of self-rated health had the lowest levels of burden and the most positive perceptions of caregiving.Discussion and implications
Developing an ethnodrama in partnership with caregivers is a unique and feasible method of caregiver support, mentoring, reflexivity, and meaning making. Promoting caregiver health early in the caregiving trajectory has the potential of reducing burden and elevating positivity towards caregiving.
SUBMITTER: Eaton J
PROVIDER: S-EPMC8660552 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:ObjectivesHIV infection places children at neurodevelopmental risk; for young children in poverty, risk is compounded by compromised caregiving quality. The mediational intervention for sensitizing caregivers (MISC) program trained caregivers on fostering daily interactions with young children. We hypothesized that MISC could enhance neurodevelopment of rural Ugandan HIV-infected children and improve mental health outcomes of their caregivers, which might mediate improved caregiving quality.DesignA randomized trial of HIV-infected young children (ages 2-5 years) and their female caregivers; cluster randomization was to MISC or a nutrition curriculum.SettingA total of 18 geographic clusters in rural Uganda.Study participantsChildren and caregivers were evaluated at baseline, 6 months, 1 year, and 1-year post-training.Main outcome measuresMullen Scales of Early Learning, the Color-Object Association Test for memory, the Early Childhood Vigilance Test of attention, and the Behavior Rating Inventory of Executive Function for the children. Caregivers completed measures of depression and anxiety symptoms and daily functioning.ResultsMISC had a significant impact on postintervention receptive language (adjusted mean difference?=?3.13, 95% confidence interval 0.08, 6.18) that persisted at 1-year follow-up. MISC caregivers reported significantly less functional impairment postprogram (adjusted mean difference?=?-0.15, 95% confidence interval -0.28, -0.01). Other outcomes were NS.ConclusionBoth intervention conditions resulted in improvements in the study children over time. MISC showed additional impacts on child language and caregiver well-being. Future directions that include assessing the extent enhanced language development resulting from improved caregiving may better prepare impoverished children for school.
| S-EPMC7906824 | biostudies-literature
Project description:BackgroundInformal caregivers represent an important and vulnerable part of the society. They can experience negative psychological symptoms, such as depression and anxiety. Internet-based cognitive behavioural therapy (ICBT) is a promising psychological support option that could be effective in reducing informal caregiver burden as well as improving psychological well-being. Qualitative studies are valuable for gaining insights into participant experiences of using ICBT.ObjectiveThe main aim of this study was to explore informal caregiver experiences and hence acceptability and feasibility of the transdiagnostic ICBT program aimed at reducing informal caregiver burden and increasing the quality of life.MethodsFollowing a strategic sampling procedure, 23 informal caregivers were recruited from previous randomized controlled trial for informal caregivers in Lithuania. Participants were interviewed over phone, using semi-structured interview questions. Interviews were analysed using a thematic analysis approach.ResultsFour themes and a total of 10 sub-themes were generated: I A program as a means of change (Convenience and applicability of the format and materials; Ability to focus on own needs; Opportunity for communication), II Suggestions for the program (Including live support; Tailoring materials and format; Providing with more time and resources), III Driving personal and situational forces (Developing acceptance and adjustment over time; Being proactive and/or receiving support) and Hindering situational factors (Deterioration and unpredictability of the care-receivers health; Lacking external support and opportunities for respite).ConclusionsMost of the informal caregivers were found to be satisfied with the program's format and materials as well as the communication with the therapist via a message function in the program. Some suggestions were made regarding implementation of the live support option. Also, suggestions regarding possibility for tailoring the program's content. Lastly, several personal and situational factors were identified as important in affecting informal caregiver well-being. We conclude that ICBT has potential in reducing informal caregiver burden and improving psychological health. Further research trials are warranted for evaluating both, the effectiveness and the feasibility of the program.
| S-EPMC7811118 | biostudies-literature
Project description:ObjectivesTo measure the association between spousal depression, general health, fatigue and sleep, and future care recipient healthcare expenditures and emergency department (ED) use.DesignProspective cohort study.SettingHealth and Retirement Study.ParticipantsHome-dwelling spousal dyads in which one individual (care recipient) was aged 65 and older and had one or more activity of daily living or instrumental activity of daily living disabilities and was enrolled in Medicare Part B (N = 3,101).ExposureCaregiver sleep (Jenkins Sleep Scale), depressive symptoms (Center for Epidemiologic Studies Depression-8 Scale), and self-reported general health measures.MeasurementsPrimary outcome was care recipient Medicare expenditures. Secondary outcome was care recipient ED use. Follow-up was 6 months.ResultsCaregiver depressive symptoms score and six of 17 caregiver well-being measures were prospectively associated with higher care recipient expenditures after minimal adjustment (P < .05). Higher care recipient expenditures remained significantly associated with caregiver fatigue (cost increase, $1,937, 95% confidence interval (CI) = $770-3,105) and caregiver sadness (cost increase, $1,323, 95% CI = $228-2,419) after full adjustment. Four of 17 caregiver well-being measures, including severe fatigue, were significantly associated with care recipient ED use after minimal adjustment (P < .05). Greater odds of care recipient ED use remained significantly associated with caregiver fatigue (odds ratio (OR) = 1.24, 95% CI = 1.01-1.52) and caregiver fair to poor health (OR = 1.23, 95% CI = 1.04-1.45) after full adjustment. Caregiver total sleep score was not associated with care recipient outcomes.ConclusionPoor caregiver well-being, particularly severe fatigue, is independently and prospectively associated with higher care recipient Medicare expenditures and ED use.
| S-EPMC5762126 | biostudies-literature
Project description:The influence of neighborhood characteristics on residents' well-being and residential satisfaction has been widely studied, and has presented considerable variability. This study analyses the extent to which neighborhood resources influence variables relating to well-being, and examines the relationship between neighborhood resources and residents' perceptions. The study was structured over two phases: (1) the neighborhood resources were evaluated, and (2) 252 neighborhood residents was interviewed. The results have shown that the observation by independent observers of neighborhood resources is connected to residents' perceptions of their neighborhood. Residents' perceptions of their neighborhoods is associated with indicators of well-being, and residential satisfaction. Also, the reasons for living in the neighborhood appear to be connected to the observed availability of resources and the perception of it. Wellbeing and residential satisfaction are the outcome of multiple aspects that are not limited to structural and material elements of neighborhoods.
| S-EPMC6685347 | biostudies-literature
Project description:ImportanceUnderstanding youth well-being during the COVID-19 pandemic can help appropriately allocate resources and inform policies to support youth.ObjectiveTo examine caregiver-reported changes in the psychological well-being of their children 3 to 4 months after the start of COVID-19 stay-at-home orders, and to examine the association of caregiver-reported COVID-19 exposure and family stressors with caregiver perceptions of child psychological well-being.Design, setting, and participantsThis survey study used an anonymous survey distributed via email from June 24 to July 15, 2020, to 350 000 families of students attending public schools in Chicago, Illinois. The a priori hypotheses were that caregivers would report worsening in child psychological well-being during the closure period compared with preclosure and that exposure to COVID-19-related stressors would be associated with a higher probability of worsening child psychological well-being. Data were analyzed from September 10, 2020, to March 15, 2021.Main outcomes and measuresOutcomes were 7 mental health concerns and 5 positive adjustment characteristics reported by caregivers using a retrospective pre-post design. COVID-19 exposure and family stressors were also reported by caregivers.ResultsAmong 350 000 families invited to participate, 32 217 caregivers (10 827 [39.3%] White, 8320 [30.2%] Latinx, 6168 [22.4%] Black; 2223 [8.1%] with multiple or other races/ethnicities) completed the survey on behalf of 49 397 children in prekindergarten through 12th grade. Child-specific outcomes were reported for 40 723 to 40 852 children depending on the specific question. The frequency of caregiver endorsement of youth mental health concerns ranged from 0.1 percentage point (suicidal ideation or self-harm, reported by 191 caregivers [0.5%] preclosure vs 246 caregivers [0.6%] during closure; P < .001) to 28.3 percentage points (loneliness, reported by 1452 caregivers [3.6%] preclosure vs 13 019 caregivers [31.9%] during closure; P < .001) higher after the end of in-person instruction compared with preclosure. Frequency of caregiver endorsement of youth positive adjustment characteristics ranged from -13.4 percentage points (plans for the future, reported by 18 114 caregivers [44.3%] preclosure vs 12 601 caregivers [30.9%] during closure; P < .001) to -30.9 percentage points (positive peer relationships, reported by 24 666 caregivers [60.4%] preclosure vs 19 130 caregivers [46.8%] during closure; P < .001) lower after the end of in-person instruction. Significant differences in COVID-19 exposure were observed across racial/ethnic (F3,27 534 = 614.8; P < .001) and household income strata (F5,27 506 = 842.0; P < .001). After accounting for covariates, all mental health concerns increased in probability (eg, angry: odds ratio, 1.55 [95% CI, 1.48-1.62]; P < .001) and all the positive adjustment characteristics decreased in probability (eg, hopeful or positive: odds ratio, 0.88 [95% CI, 0.84-0.92]; P < .001) as COVID-19 exposure and family stressors increased.Conclusions and relevanceIn this survey study of caregivers during the COVID-19 pandemic, COVID-19 and resulting exposure to stress were associated with worse youth psychological well-being, demonstrating the need for a comprehensive public health approach that prioritizes children's well-being and draws broad public attention to the mental health needs of youth.
| S-EPMC8085728 | biostudies-literature
Project description:Background and objectivesDespite growing diversity among the aging population and extensive previous research on racial/ethnic minority caregivers, little research has been conducted on the potentially unique experiences and outcomes of informal caregivers of foreign-born care recipients. Using nationally representative data and the Stress Process Model, the current study examined the differences in caregiver outcomes (care burden, psychological well-being, and self-rated health) by care recipient nativity status (U.S.-born vs. foreign-born) and the extent to which caregiver outcomes vary by care recipient nativity status and caregiver race/ethnicity (non-Hispanic white, non-Hispanic black, Hispanic, and Others).Research design and methodsThe current study used Round 5 of the National Health and Aging Trends Study and the National Study of Caregiving (N = 1,436). We conducted ordinary least squares regression to analyze the differences in caregiver's outcomes by care recipient nativity status and caregiver race/ethnicity and to investigate the impacts of the inclusion of caregiving factors (background factors, primary stressors, secondary stressors, and resources).ResultsRegression analyses showed that only care burden significantly varied by care recipient nativity status after controlling for covariates. Caregivers of foreign-born care recipients reported a higher burden. However, when interactions of care recipient nativity status × caregiver race/ethnicity were introduced, non-Hispanic black and Hispanic caregivers of foreign-born care recipients were more likely to report better psychological well-being and self-rated health compared to their counterparts. Across caregiver groups, better caregiver-care recipient relationship quality and less caregiver chronic conditions were associated with less burden and better caregiver psychological well-being and self-rated health.Discussion and implicationsCare recipient nativity status and caregiver race/ethnicity may have complex effects on caregiving experiences. Given the observed significant interaction effects for caregiver psychological well-being and self-rated health, cultural factors may affect the extent to which these caregivers appraise their caregiving. Future research should delve into the appropriate ways to assess care stress as well as resilience among each caregiver group. Our results indicate the need for research, education, and practice that assess cultural and within-group differences among caregivers and inform needed changes to structural barriers.
| S-EPMC7679974 | biostudies-literature
Project description:Despite the importance of subjective well-being (SWB) for students' mental and physical health, there is a lack of longitudinal studies investigating the development of SWB in adolescents and what factors are associated with it over time. The present study seeks to shed further light on this question by investigating adolescents longitudinally. A sample of German academic tracks students (N = 476) from five schools were followed longitudinally over a time period of 30 months with four measurement points from Grade 11 to Grade 13. Alongside the longitudinal assessment of SWB (mood and life satisfaction), a range of other factors were also assessed at t1 including; demographic factors (sex, age, socio-economic status (HISEI)), intelligence, grades (report cards provided by the schools), personality (neuroticism, extraversion) and perceived parental expectations and support. Latent growth curve models were conducted to investigate the development of SWB and its correlates. On average, mood and life satisfaction improved at the end of mandatory schooling. However, students significantly differed in this pattern of change. Students' life satisfaction developed more positively if students had good grades at t1. Furthermore, even though introverted students started with lower life satisfaction at t1, extraverts' life showed greater increases over time. Changes in mood were associated with socio-economic background; the higher the HISEI the more positive the change. As social comparisons in school performance are almost inevitable, schools should intervene to buffer the influence of school grades on students' SWB.
| S-EPMC6801746 | biostudies-literature
Project description:Introduction: In May 2010, the Caregivers and Veterans Omnibus Health Services Act of 2010, was signed into law in the United States, establishing the Program of Comprehensive Assistance for Family Caregivers (PCAFC) provided through the VA Caregiver Support Program (CSP). Prior to this program, over half of family caregivers reported being untrained for the tasks they needed to provide. The training through PCAFC represents the largest effort to train family caregivers in the U.S., and the features of the program, specifically a monthly stipend to caregivers and access to a Caregiver Support Coordinator at each VA medical center nationally, make it the most comprehensive caregiver support program ever enacted in the U.S. Methods: The purpose of this study is to examine the association between PCAFC participation and caregiver well-being following enrollment, comparing participating PCAFC caregivers to caregivers who applied to but were not approved for PCAFC participation (non-participants). Well-being is defined using three diverse but related outcomes: depressive symptoms, perceived financial strain, and perceived quality of the Veteran's health care. Additional well-being measures also examined include the Zarit Burden Inventory and positive aspects of caregiving. Results: The survey sample comprised of 92 caregivers approved for PCAFC and 66 caregivers not approved. The mean age of responding caregivers was 45; over 90% of caregivers were female; and over 80% of caregivers were married in both groups. We find promising trends in well-being associated with PCAFC participation. First, the perception of financial strain declined among participants compared to non-participants. Second, while depressive symptoms did not improve for the PCAFC caregivers, depressive symptoms increased among non-participants. Third, perceived quality of the Veteran's VA healthcare was no different between participants and non-participants. However, the 158 returned surveys reflect only a 5% response rate; hence this evidence is preliminary. Conclusion: Despite cautioning that results be interpreted as preliminary, this study provides unique descriptive information about young caregivers of U.S. post-9/11 Veterans, and offers a first step in filling the evidence gap about how comprehensive caregiver support in the U.S. may affect caregiver well-being. These preliminary findings should be explored and validated in a larger sample.
| S-EPMC6538764 | biostudies-other
Project description:Little is known about gender differences in sexuality among community-dwelling heterosexual couples in which one partner has Alzheimer's disease (AD). Few studies have examined gender differences in specific sexual behaviors or their associations with caregiver well-being. This study evaluated the impact of gender differences on intimacy and sexual satisfaction in marital relationships in which one partner has AD.Baseline measures were collected from 162 AD patients and their partners enrolled in a multi-site study between 2001 and 2009 to evaluate gender differences in measures of intimacy, caregiver well-being, and patient sexual behaviors.While over 70% of all patients initiated physically intimate activities (i.e., kissing, hugging, and intercourse), most did not initiate intercourse specifically. Female caregivers reported higher levels of stress and depressive symptoms than male caregivers (p < 0.01). Satisfaction with intimacy was significantly associated with fewer stress and depressive symptoms in female caregivers (r = -0.29, p < 0.01). Caregiver gender, satisfaction with intimacy, and caring for a patient with mild AD were significant predictors of caregiver depressive symptoms (p's < 0.05).The majority of couples dealing with AD reported engaging in intimacy, suggesting its importance in the relationship. Female caregivers who reported less sexual satisfaction reported more frequent stress and depressive symptoms. Caregiver gender, satisfaction with intimacy, and the AD patient's level of cognitive functioning significantly contributed to caregiver well-being. Gender-specific therapies to address patient sexual difficulties and caregiver well-being could potentially maintain or improve the marital relationship.
| S-EPMC3358115 | biostudies-literature
Project description:ObjectiveThree-year changes in well-being were studied among family caregivers of an epidemiologically derived sample of stroke survivors from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study and compared to matched noncaregivers.MethodsFamily caregivers of REGARDS participants who experienced a stroke event completed telephone interviews assessing depressive symptoms, mental and physical health quality of life (QOL), life satisfaction, and leisure satisfaction at approximately 9, 18, 27, and 36 months after the stroke (n = 235). For each stroke caregiver, a family member of a stroke-free REGARDS participant was enrolled as a matched noncaregiving control (n = 235) and completed similar interviews.ResultsMultilevel longitudinal models found that caregivers showed poorer well-being at 9 months poststroke than controls on all measures except physical health QOL. Significant differences were sustained for 22 months after the stroke event for depressive symptoms, 31 months for mental health QOL, and 15 months for life satisfaction. For leisure satisfaction, differences were still significant at 36 months poststroke. Caregiving effects were similar across race and sex.ConclusionsStroke caregiving is associated with persistent psychological distress, but life satisfaction, depression, and mental health QOL became comparable to noncaregivers by 3 years after stroke. Caregiver leisure satisfaction was chronically lower than in noncaregivers. Intervention for stroke caregivers should recognize both the strains faced by caregivers and their capacity for successful coping over time.
| S-EPMC4388745 | biostudies-literature