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Marsack, Christina N., and Faith P. Hopp. "Informal Support, Health, and Burden Among Parents of Adult Children With Autism." Gerontologist 59, no. 6 (July 5, 2018): 1112–21. http://dx.doi.org/10.1093/geront/gny082.
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Abstract Background and Objectives Many adults with autism spectrum disorders require lifelong reliance on caregiver support. As these caregivers age and experience health challenges, social support can be critical. This study seeks to understand if caregiver health moderates the relationship between informal social support and caregiver burden. Research Design and Methods A total of 320 parents (age 50+ years) of adult children diagnosed with ASD were recruited from autism organizations and support groups and completed a web-based survey. Separate moderation analyses were used to determine if caregiver health was moderating the relationship between informal social support and composite caregiver burden, as well as the separate domains of developmental, time dependence, emotional burden, and impact of caregiving on finances. For each analysis, perceptions of available informal social support were the independent variable, composite and domains of caregiver burden were dependent variables, and parents’ self-reported general health was the moderating variable. Results Caregiver health had a statistically significant moderating effect when predicting the relationships between informal social support and composite caregiver burden, as well as time dependence burden and impact of caregiving on finances. Discussion and Implications Increased attention should be focused on supporting the current and future needs of both aging caregivers and their adult children with ASD. Future research on the dynamics of social support, health, and burden is also urgently needed to address the growing number of aging caregivers of adults diagnosed with ASD.
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Yu, Hua, Li Wu, Shu Chen, Qing Wu, Yuan Yang, and Helen Edwards. "Caregiving burden and gain among adult-child caregivers caring for parents with dementia in China: the partial mediating role of reciprocal filial piety." International Psychogeriatrics 28, no. 11 (June 3, 2016): 1845–55. http://dx.doi.org/10.1017/s1041610216000685.
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ABSTRACTBackground:The majority of the family caregivers are adult children in China. The aim of this study was to examine the mediating role of reciprocal filial piety (RFP) between the care recipient's behavioral and psychological symptoms of dementia (BPSD) and the caregiver's burden or gain among adult-child caregivers caring for parents with dementia in China.Methods:Using Kramer's caregiver adaptation model as the research framework, a cross-sectional survey collected data from 401 adult-child caregivers caring for parents with dementia from hospitals in China.Results:Results of the regression analysis revealed that after adjusting for covariates, the regression coefficient between care recipient's BPSD and caregiver burden reduced fromc= 1.01 toc′ = 0.91 when controlling for RFP. Using the bootstrap approach, the estimated indirect effect through RFP between care recipient's BPSD and caregiver burden was 0.11 (95% CI: 0.03, 0.20). The mediation proportion was 11%. The absolute value of the regression coefficient between care recipient's BPSD and caregiver gain reduced fromc= −0.75 toc′ = −0.63 when controlling for RFP. The bootstrapped estimate of the indirect effect through RFP between care recipient's BPSD and caregiver gain was −0.12 (95% CI: −0.18, −0.07). The mediation proportion was 12%.Conclusions:The findings suggest that the effect of care recipient's BPSD on caregiver's burden/gain may be related to the level of RFP among adult-child caregivers in China.
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Fenton, Anny, Alexi A. Wright, Julia H. Rowland, Erin E. Kent, Kristin Litzelman, and Nancy Lynn Keating. "Comparing adult child and spousal caregiver burden and potential causes." Journal of Clinical Oncology 39, no. 15_suppl (May 20, 2021): 12127. http://dx.doi.org/10.1200/jco.2021.39.15_suppl.12127.
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12127 Background: Adult children caring for a parent with cancer comprise a significant segment of caregivers. Demographic trends indicate this caregiving population will grow as the baby boomer generation ages. Yet little is known about adult child caregivers’ needs and experiences and how they differ from the well-studied spousal caregiver. This knowledge gap may hinder efforts to ameliorate adult children’s caregiver burden and its impact on patients. Methods: We analyzed adult child and spousal/partner caregivers’ surveys from the Cancer Care Outcomes Research and Surveillance consortium, a multi-regional population-based study of approximately 10,000 persons with newly diagnosed colorectal and lung cancer. We used t-tests and a series of multivariate regression models to assess whether adult child and spousal caregivers’ caregiving responsibilities, social/emotional burden, and financial burden (scaled 0-10) differed and examined patient and caregiver characteristics’ mediation of variation in burden. Results: Compared to spouses/partners (N=1029), adult children (N=230) completed similar levels of caregiving tasks but spent less time (14 vs. 24 hours/week; p<0.001). However, adult children experienced higher social/emotional burden (2.9 vs. 2.4; p<0.01). In baseline models controlling for patient clinical factors, caregiving characteristics, and caregiver demographics, adult children’s average social/emotional and financial burdens were statistically higher than spouses/partners. Additional adjustment for caregivers’ childcare responsibilities and employment eliminated social/emotional and financial burden disparities. Additional adjustment to the baseline model for caregiver-patient gender concordance eliminated the social/emotional burden gap. Communication quality was a large and statistically significant predictor of both burdens (p<0.001). Conclusions: Adult children spend less time caregiving than spouses/partners but experience higher caregiving burden. Adult children’s childcare and career responsibilities help explain this increased burden. Gender concordance between caregiver and patient may also contribute to social/emotional burden, adding important context to prior research indicating female caregivers experience the greatest burden. Interventions to improve communication between caregivers and patients have the potential to reduce both adult child and spouses/partners caregiver burden.[Table: see text]
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Dieker, JoAnna, Kelsey Bacharz, Kendall Weber, and Sara H. Qualls. "CHARACTERISTICS OF CAREGIVERS WITH FAMILY CONFLICT." Innovation in Aging 3, Supplement_1 (November 2019): S487. http://dx.doi.org/10.1093/geroni/igz038.1809.
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Abstract The family environment is often overlooked in caregiver research and assessment, despite having implications for caregiver health and well-being (Zarit et al., 2019). The purpose of the present study was to examine differences on two types of family conflict (beliefs and support) among a diverse sample of caregivers. The present sample consisted of help-seeking (n = 375) and non-help-seeking (n = 415) caregivers (total n = 790). Caregivers filled out the Caregiver Reaction Scale (O’Malley & Qualls, 2017), a multidimensional assessment of the caregiver experience. Results of a 2 (adult children, spouse) x 2 (help-seeking, non-help-seeking) ANOVA indicated that help-seeking caregivers reported significantly more conflict over family beliefs than did non-help-seeking caregivers (M = 1.93 and 1.58, respectively), F(3,606) = 21.10 p < .001. Adult children caregivers reported significantly greater conflict over family beliefs (M = 1.91) than did spouse caregivers (M = 1.60), F(3,606) = 10.66, p < .001. Adult children caregivers also reported significantly greater conflict over family support (M = 1.87) than did spouse caregivers (M = 1.57), F(3,600) = 16.23, p < .001. Results highlight that certain caregiving contexts (e.g., adult children caring for a parent) potentially increase family conflict, which has implications for caregiver burden. Family conflict over beliefs is also related to help-seeking in caregivers. Findings inform appropriate assessment and intervention regarding the family environment in caregiving.
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Suitor, J. Jill, Megan Gilligan, Marissa Rurka, Siyun Peng, Jordan Meyer, and Karl Pillemer. "Accuracy of Adult Children’s Perceptions of Mothers’ Caregiver Preferences." Gerontologist 59, no. 3 (June 2, 2018): 528–37. http://dx.doi.org/10.1093/geront/gny064.
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AbstractBackground and ObjectivesMost older mothers have strong preferences regarding which offspring will serve as their future caregivers, and violation of these preferences has been found to have consequences for mothers’ psychological well-being. However, no study has examined the accuracy of adult children’s perceptions of their mothers’ caregiver preferences. In this article, we compare mothers’ stated preferences for particular caregivers with their adult children’s perceptions of their mothers’ preferences.Research Design and MethodsData were collected from 675 adult children and their mothers nested within 285 families as part of the Within-Family Differences Study.ResultsOnly 44.6% of adult children accurately reported their mothers’ preferences for particular offspring as caregivers. Consistent with our hypotheses, accuracy was higher when mothers and children shared values regarding filial piety, and lower when children were parents, had poor health, and lived further away. Surprisingly, primary caregivers were substantially less likely to accurately report mothers’ caregiver preferences than were noncaregivers. This counterintuitive pattern can be explained by the finding that most mothers were cared for by children whom they did not prefer and may have therefore been reluctant to share their preferences with those caregivers.Discussion and ImplicationsGiven the negative psychological consequences for mothers whose caregiver preferences are violated, the high level of inaccuracy found among adult children has important implications when mothers face serious health events. These findings underscore the need for intervention efforts to encourage practitioners and clinicians to collect information directly from mothers regarding preferences for particular offspring as caregivers.
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Miller, Karen. "Acquisition of variable rules: /s/-lenition in the speech of Chilean Spanish-speaking children and their caregivers." Language Variation and Change 25, no. 3 (September 27, 2013): 311–40. http://dx.doi.org/10.1017/s095439451300015x.
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AbstractThis paper examines the acquisition of the variable rules constraining Spanish syllable-final /s/-lenition in Chilean Spanish–speaking children, and whether adult-to-adult speech differs from child-directed speech in the production of s-lenition. The data of 10 children (ages 2;04–5;09) and their caregivers is presented. Tokens of syllable final /s/ were coded for pronunciation and a variable-rule analysis examining the effect of various linguistic and extralinguistic constraints was carried out. The results show that child and caregiver use of s-lenition is similar to that found in adult-to-adult speech; however, two of the youngest children showed near-categorical behavior. This paper highlights the important role of caregiver input on acquisition of s-lenition and proposes that production of s-lenition in utterance-final position in the input (caregiver's speech) is linked to young children's acquisition of s-lenition; young children exposed to an input with high rates of [s] in utterance-final position acquire s-lenition earlier.
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Deepa Prakash, Archana Krishna Murthy, Arun Paul, Khundrakpam Eremba, Gaurav Gupta, and Prijitha Alex. "Oral Health Literacy among Caregivers in Bangalore City, India." International Healthcare Research Journal 3, no. 3 (June 20, 2019): 116–22. http://dx.doi.org/10.26440/ihrj/0303.06243.
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Purpose: To assess caregiver’s oral health literacy of children aged 3-6 years in Bangalore city.
Methods: A cross-sectional study was conducted on 635 child/caregiver dyads from a sample of children aged 3-6 years who were selected from anganwadis and preschools in Bangalore city. Demographic details were collected using structured questionnaire. Caregiver literacy was measured using the Rapid Estimate of Adult Literacy in Dentistry (REALD-30).
Results: Among 635 child/caregiver dyads, caregiver’s and children’s mean ages were 33.45 years(SD = 3.36) and 5.28 years (SD =0.67), respectively. The mean literacy score was 14.25 (SD= 7.67). The results also indicated that there was an association between socio-demographic variables such as age, education, income, occupation, socioeconomic status and caregivers’ oral health literacy.
Conclusion: Caregiver’s oral health literacy is influenced by sociodemographic factors. Oral health literacy is potential determinant and as impact on oral health outcomes in young children.
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Fjose, Marianne, Grethe Eilertsen, Marit Kirkevold, and Ellen K. Grov. "Caregiver reactions and social provisions among family members caring for home-dwelling patients with cancer in the palliative phase: A cross-sectional study." Clinical Nursing Studies 7, no. 4 (July 31, 2019): 1. http://dx.doi.org/10.5430/cns.v7n4p1.
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Objective: Studies focusing on the impact of caregiving for older adult home-dwelling patients with cancer in the palliative phase, particularly the burdens on different family caregiver groups, are limited. The objective of this study was to assess and compare caregiver reactions and social provisions among different family caregiver groups in Norway.Methods: The sample consisted of 58 family members caring for 26 home-dwelling older adult patients with advanced cancer. The Caregiver Reaction Assessment and Social Provisions Scale were used to assess the caregiver reactions and social support, respectively. The analyses were performed using descriptive statistics.Results: Significant differences were revealed between the family caregiver groups in the following three dimensions of the Caregiver Reaction Assessment: impact on schedule, lack of family support and impact on health. Significant differences were revealed between the family caregiver groups in the following two dimensions of the Social Provisions Scale: nurturance and attachment.Conclusions: In our study, children and children-in-law caring for widowed patients and spouses were the most vulnerable family caregivers. We recommend assessing the caregiver situation of all available family members caring for older adult patients with advanced cancer to identify the most vulnerable caregivers.
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Norton, Maria C., Christine Clark, Elizabeth B. Fauth, Kathleen W. Piercy, Roxane Pfister, Robert C. Green, Christopher D. Corcoran, Peter V. Rabins, Constantine G. Lyketsos, and JoAnn T. Tschanz. "Caregiver personality predicts rate of cognitive decline in a community sample of persons with Alzheimer's disease. The Cache County Dementia Progression Study." International Psychogeriatrics 25, no. 10 (July 5, 2013): 1629–37. http://dx.doi.org/10.1017/s1041610213001105.
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ABSTRACTBackground:Environmental influences on the rate of Alzheimer's disease (AD) progression have received little attention. Our objective was to test hypotheses concerning associations between caregiver personality traits and the rate of AD progression.Methods:Care receivers (CR) were 161 persons with AD from a population-based dementia progression study; 55 of their caregivers were spouses and 106 were adult children. Cognitive status of the CR was measured with the Mini-Mental State Examination every six months, over an average of 5.6 (range: 1–14) years. Linear mixed models tested rate of cognitive decline as a function of caregiver personality traits from the NEO Five-Factor Inventory.Results:Significantly faster cognitive decline was observed with higher caregiver Neuroticism overall; however, in stratified models, effects were significant for adult child but not spouse caregivers. Neuroticism facets of depression, anxiety, and vulnerability to stress were significantly associated with faster decline. Higher caregiver Extraversion was associated with slower decline in the CR when caregivers were adult children but not spouses.Conclusions:For adult child caregivers, caregiver personality traits are associated with rate of cognitive decline in CRs with AD regardless of co-residency. Results suggest that dementia caregiver interventions promoting positive care management strategies and ways to react to caregiving challenges may eventually become an important complement to pharmacologic and other approaches aimed at slower rate of decline in dementia.
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Pan, Yuqin, Patricia S. Jones, and Patricia Pothier. "The Relationship Between Mutuality and Health-Related Quality of Life in Adult Child Caregivers in China." Journal of Family Nursing 23, no. 3 (July 24, 2017): 366–91. http://dx.doi.org/10.1177/1074840717718540.
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The strain inherent in caregiving relationships between adult children and aging parents is a prominent issue in contemporary China due to a combination of demographic and socioeconomic changes. The purpose of this study was to explore how mutuality, a positive quality of caregiving relationships, contributes to the physical health and mental health (health-related quality of life [HRQoL]) of adult child caregivers [ACCs] of parent stroke survivors. A cross-sectional correlational study was conducted on a nonproportional quota sample of 126 ACCs, using questionnaires of demographics, the 15-item Mutuality Scale, and the Second Version of the Standard 12-Item Health Survey (SF-12v2). Higher mutuality was found to be correlated with better caregiver physical health and mental health. However, after adjusting for the covariates, mutuality significantly explained 4.6% of the variance of caregiver physical health (β = .22, ΔR2 = .046, p < .01) but it did not significantly explain the variance of caregiver mental health. Although multiple factors correlate with Chinese family caregivers’ HRQoL, this was the first study exploring the impact of caregiver–care receiver dyadic relationships on caregiver HRQoL in mainland China by using a mutuality scale with SF-12v2. Despite the fact that the Chinese tradition of filial piety can facilitate mutuality, socioeconomic changes and legislation that require adult children to care for aging parents appear to create high stress among family caregivers. Higher levels of mutuality contribute to better physical health in Chinese family caregivers. Therefore, culturally appropriate family nursing strategies and social policies in China could enhance caregiver mutuality and potentially promote their HRQoL, in particular physical health.
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Liu, Jinyu. "Are Spouses More Likely to be Depressed Than Adult Children in Dementia Care? A Mixed-Methods Study." Innovation in Aging 4, Supplement_1 (December 1, 2020): 624. http://dx.doi.org/10.1093/geroni/igaa057.2126.
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Abstract Using a mixed-methods approach, this study examines caregiver burden and depressive symptoms of Chinese American spouses and adult-children who provided care for their spouse or parents with dementia. Quantitative data were collected from a questionnaire-based survey in 124 Chinese caregivers in New York City and narrative data were gathered from in-depth interviews with 27 of these caregivers. The results of linear regression show that there was no difference in objective burden (caring tasks) between spousal and adult-child caregivers, but spousal caregivers reported significantly higher levels of subjective burden and depressive symptoms. Based on the structural equation modeling, it was found that subjective burden significantly mediated the association between being a spousal caregiver on depressive symptoms. The narrative data show that, compared to the adult-child caregivers, spousal caregivers were more likely to express their worries about the sequence of death (what will happen if they die earlier than their care receiver?).
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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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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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Savundranayagam, Marie Y., and J. B. Orange. "Relationships between appraisals of caregiver communication strategies and burden among spouses and adult children." International Psychogeriatrics 23, no. 9 (March 24, 2011): 1470–78. http://dx.doi.org/10.1017/s1041610211000408.
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ABSTRACTBackground: The purpose of this study was to investigate the impact of caregivers’ appraisals of the effectiveness of their own communication strategies on caregiver burden when caring for family members with Alzheimer's disease (AD).Methods: Family caregivers (N = 84) of participants with AD completed questionnaires appraising communication strategies, problem behaviors, and levels of three types of burden.Results: Hierarchical linear regression models revealed that effective strategies and kinship status were significantly linked with stress burden, whereas effective strategies and problem behaviors were significantly related to relationship burden. Cognitive status of participants with AD significantly predicted objective burden. Caregivers who rated effective strategies as helpful were more likely to experience lower levels of stress and relationship burden.Conclusions: Findings provide preliminary support for understanding mechanisms by which the appraisals of communication strategies influence caregiver burden and justify testing empirically derived communication interventions.
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Lu, Nan, Nan Jiang, Qian Sun, and Vivian W. Q. Lou. "Community Social Capital and Positive Caregiving Experiences Among Adult-Children Caregivers of Older Adults With Disabilities in Urban China." Research on Aging 42, no. 1 (September 22, 2019): 3–12. http://dx.doi.org/10.1177/0164027519876095.
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The present study aimed to examine the association between community social capital and positive caregiving experiences among adult-children caregivers of disabled older adults in urban China. Data for this study were derived from the 2016 wave of the Longitudinal Study on Family Caregivers for Frail Older Adults Aged 75 or Above in Shanghai. The final analysis featured 440 disabled older adult and adult-children caregiver dyads. Multiple indicators and multiple causes modeling was used to test the proposed model from a structural equation modeling perspective. Provision of support to others was significantly associated with self-affirmation. Citizenship activity was significantly associated with life enrichment. Support of units (i.e., employers) was significantly associated with self-affirmation and life enrichment. The findings support the integration of the stress process model and social capital theory and highlight the important role of community social capital in enhancing the subdimensions of positive caregiving experiences. Policy and intervention implications are discussed.
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Alonso, Windy Williams, Lisa A. Kitko, and Judith E. Hupcey. "Intergenerational Caregivers of Parents With End-Stage Heart Failure." Research and Theory for Nursing Practice 32, no. 4 (November 2018): 413–35. http://dx.doi.org/10.1891/1541-6577.32.4.413.
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Purpose:The purpose of this study was to longitudinally explore the experiences of young adult, adult, and older adult intergenerational caregivers caring for a parent with end-stage heart failure (HF).Design:This study was a secondary analysis of qualitative data collected during a longitudinal study that sought to determine the palliative care needs of individuals with end-stage HF and their family caregivers.Methods:Longitudinal interviews from 23 young adult, adult, and older adult children who were caring for a parent with end-stage HF were selected for thematic analysis. Researchers individually analyzed the interviews and then, as a group, came to a consensus about themes.Findings:Five major themes were identified: caregiver resources, role management, caregiver–parent relationships, filial responsibility, andpersonal benefits and challenges.Conclusions:These intergenerational caregivers struggled to balance their busy lives and caregiving roles. However, most felt supported by other family members or external resources. Longitudinal findings support a need for improved employer-based support for intergenerational caregivers and special attention to young carers in research and practice. Recognition of and advocacy for intergenerational caregivers providing care for a chronically ill parent is needed.
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Nam, S., J. Lee, and S. Bartholomae. "CAREGIVER BURDEN AMONG ADULT CHILDREN ASSOCIATED WITH OLDER ADULTS’ CARE NEEDS." Innovation in Aging 2, suppl_1 (November 1, 2018): 795. http://dx.doi.org/10.1093/geroni/igy023.2947.
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O’Conor, Rachel, Morgan Eifler, Andrea Russell, Lauren Opsasnick, Julia Yoshino Benavente, Laura Curtis, and Michael Wolf. "Medication Management Among Older Adults With Multiple Chronic Conditions: What Role Do Caregivers Play?" Innovation in Aging 4, Supplement_1 (December 1, 2020): 431–32. http://dx.doi.org/10.1093/geroni/igaa057.1394.
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Abstract Many older adults manage multiple chronic conditions (MCC) that require adherence to complex medication regimens. Few studies have investigated the degree to which caregivers support medication-related behaviors. We conducted semi-structured qualitative interviews with 25 caregivers of older adults with MCC to characterize caregiver medication assistance. Two coders used content and constant comparative analysis to analyze transcripts. The mean age of caregivers was 61 years; the majority were female (68%) and identified as non-white (Black, 52%; Hispanic, 8%). Caregivers were predominantly spouses (n=10), or children (n=11). Older adults were on average 73 years old, managing 5 chronic conditions and prescribed 7 medications. Caregivers acknowledged the importance of medications to the older adult’s health, but their involvement in daily medication management was limited. Some caregivers preferred that the older adult continue these tasks to maintain autonomy, especially when caring for older adults who valued maintaining independence. Caregivers assumed medication responsibilities after older adults experienced sudden changes in health or upon observing non-adherence (e.g. full pill bottles). Older adults with higher medication burden (12+ medicines) adopted inefficient, cumbersome medication management practices; caregivers suggested simplified strategies, but the older adults refused to adopt recommended strategies. To combat resistance from the older adult, caregivers disguised assistance and deployed workaround strategies to monitor medication-taking behaviors. These findings suggest older adults and caregivers share a value of promoting independence of medication management, up until safety is seriously questioned. Additionally, there is a breakdown in communication at the time when older adults may benefit from increased caregiver involvement.
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Kahn, Phoebe V., Heather A. Wishart, Jennifer S. Randolph, and Robert B. Santulli. "Caregiver Stigma and Burden in Memory Disorders: An Evaluation of the Effects of Caregiver Type and Gender." Current Gerontology and Geriatrics Research 2016 (2016): 1–5. http://dx.doi.org/10.1155/2016/8316045.
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Despite considerable gains in public awareness of dementia, dementia patients and their caregivers continue to be stigmatized. Previous work has explored stigma and burden among adult children of persons with dementia in Israel, but no similar data exist for spousal caregivers or caregivers in general in the United States. This study examines the differences in stigma and burden experienced by spousal and adult child caregivers and male and female caregivers of persons with dementia. Eighty-two caregivers were given the Zarit Burden Inventory Short Form (ZBI) and the Caregiver Section of the Family Stigma in Alzheimer’s Disease Scale (FS-ADS-C). Scores on the FS-ADS-C and ZBI were positively correlated (rs=.51,p<.001). Female caregivers reported experiencing more stigma on the FS-ADS-C (t(80)= −4.37,p<.001) and more burden on the ZBI (t(80)= −2.68,p=.009) compared to male caregivers, and adult child caregivers reported experiencing more stigma on the FS-ADS-C (t(30.8)= −2.22,p=.034) and more burden on the ZBI (t(80)= −2.65,p=.010) than spousal caregivers. These results reinforce the importance of support for caregivers, particularly adult child and female caregivers who may experience higher levels of stigma and burden.
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Kupferstein, Henny. "Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis." Advances in Autism 4, no. 1 (January 2, 2018): 19–29. http://dx.doi.org/10.1108/aia-08-2017-0016.
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Purpose The purpose of this paper is to examine the prevalence of posttraumatic stress symptoms (PTSS) in adults and children who were exposed to applied behavior analysis (ABA) autism early childhood intervention. Using an online questionnaire to survey autistic adults and caregivers of autistic children, the author collected data from 460 respondents on demographics, intervention types, and current pathological behaviors with symptom severity scales. This study noted PTSS in nearly half of ABA-exposed participants, while non-exposed controls had a 72 percent chance of being asymptomatic. ABA satisfaction ratings for caregivers averaged neutral or mild satisfaction. In contrast, adult satisfaction with ABA was lower on average and also tended to take on either extremely low or extremely high ratings. Exposure to ABA predicted a higher rate and more severe PTSS in participants, but the duration of exposure did not affect satisfaction with the intervention in caregivers. Design/methodology/approach Participants were recruited for an online survey through social media networks, adult gatherings, social skills groups, and autism support groups nationwide. Adult inclusion criteria consisted of autism – diagnosed or self-diagnosed – and an age of 18 or older. A total of 460 respondents, consisting of autistic adults and caregivers of autistic children, completed an online survey. The caregiver entries (n=217) concerned 79 percent male children, 21 percent female children (male to female 3.80:1), and one MtF transgender child, ages 1-38, with an average age at diagnosis of 4.69 years. The adult entries (n=243) concerned 30 percent males, 55 percent females (male to female 0.55:1), and 14 percent other gender, ages 18-73, with an average age at diagnosis of 25.38 years. Findings Nearly half (46 percent) of the ABA-exposed respondents met the diagnostic threshold for PTSD, and extreme levels of severity were recorded in 47 percent of the affected subgroup. Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA. Adults and children both had increased chances (41 and 130 percent, respectively) of meeting the PTSD criteria if they were exposed to ABA. Both adults and children without ABA exposure had a 72 percent chance of reporting no PTSS (see Figure 1). At the time of the study, 41 percent of the caregivers reported using ABA-based interventions. Originality/value The majority of adult respondents were female, raising questions about the population of online autistic survey respondents. Further, the high numbers of reported gender other than male or female in the adult respondents, as well as at least on MtF child from the caregiver respondents indicates that future studies should consider these intersections. These accompanied significant discrepancies in reporting bias between caregivers and ABA-exposed individuals, which highlight the need for the inclusion of the adult autistic voice in future intervention design. Based on the findings, the author predicts that nearly half of ABA-exposed autistic children will be expected to meet the PTSD criteria four weeks after commencing the intervention; if ABA intervention persists, there will tend to be an increase in parent satisfaction despite no decrease in PTSS severity.
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Zajac, Kristyn, and Roger Kobak. "Caregiver unresolved loss and abuse and child behavior problems: Intergenerational effects in a high-risk sample." Development and Psychopathology 21, no. 1 (January 2009): 173–87. http://dx.doi.org/10.1017/s095457940900011x.
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AbstractThis study examines the intergenerational effects of caregivers' unresolved loss and abuse on children's behavior problems from middle childhood to early adolescence in an economically disadvantaged sample. One hundred twenty-four caregivers completed the Adult Attachment Interbiew (AAI) and a lifetime trauma interview during the age 13 wave of the study. Child behavior problems were assessed at four time points (ages 6, 8, 10, and 13) with teacher-reported Child Behavior Checklist total problem scales. The children of insecure caregivers with unresolved loss showed a consistent pattern of increased behavior problems from middle childhood to early adolescence. Caregivers' AAI status accounted for more variance in child behavior problems than did an alternative model of caregiver psychopathology (depression and dissociation). The results extend the literature on the effects of caregiver unresolved states of mind beyond infancy to older children and adolescents.
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Pan, Xi, Yeonjung Lee, Cheryl Dye, and Laurie Theriot Roley. "Financial Care for Older Adults With Dementia." International Journal of Aging and Human Development 85, no. 1 (December 27, 2016): 108–22. http://dx.doi.org/10.1177/0091415016685327.
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This article describes an examination of the sociodemographic characteristics of adult children, particularly Baby Boomer caregivers, who provide financial care to older parents with dementia. The sample including 1,011adult children dementia caregivers aged 50 to 64 years is selected from a nationally representative sample in the 2010 Health and Retirement Study. Exact logistic regression revealed that race, provision of financial assistance to caregiver children, and the number of their children are significantly associated with financial caregiving of parents. Non-White caregivers are more likely to provide financial care to their parents or parents-in-law with dementia; those who have more children and provide financial assistance to their children are less likely to provide financial care to parents with dementia. The current findings present valuable new information on the sociodemographic characteristics of adult children who provide financial assistance to parents with dementia and inform research, programs, and services on dementia caregiving.
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Dias, Rachel, José Pedro Simões-Neto, Raquel Luiza Santos, Maria Fernanda Barroso de Sousa, Maria Alice Tourinho Baptista, Isabel Barbeito Lacerda, Nathalia Ramos Santos Kimura, and Marcia Cristina Nascimento Dourado. "Caregivers’ resilience is independent from the clinical symptoms of dementia." Arquivos de Neuro-Psiquiatria 74, no. 12 (December 2016): 967–73. http://dx.doi.org/10.1590/0004-282x20160162.
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ABSTRACT Resilience is the capacity for successful adaptation when faced with the stress of adversity. We aimed to investigate the relationship between caregivers’ resilience and the sociodemographic and clinical factors of people with dementia. Cross-sectional assessment of 58 people with dementia and their caregiver dyads showed that most caregivers were female adult children. The caregivers reported moderate to higher levels of resilience, lower levels of anxiety and depressive symptoms and moderate levels of burden. Resilience was not related to the caregiver’s gender (p = 0.883), nor clinical (p = 0.807) or emotional problems (p = 0.420). The regression showed that resilience was related to the caregiver’s quality of life (p < 0.01) and inversely associated with their depressive symptoms (p < 0.01). There was no relationship between caregivers’ resilience and the sociodemographic and clinical characteristics of people with dementia. We can assume that resilience is an individual characteristic. Support groups should also focus on the factors that may increase resilience among caregivers.
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Conway, Kimberly. "The Experience of Adult Children Caregiving for Aging Parents." Home Health Care Management & Practice 31, no. 2 (October 8, 2018): 92–98. http://dx.doi.org/10.1177/1084822318803559.
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When the normal progression of life for an aging person is interrupted by a decline in physical and or mental abilities, adult children are often suddenly faced with assuming care of their parent(s). Currently, adult child caregivers of aging parents work up to 100 hours per month at caregiving. Most existing literature is focused on informal caregivers, which can consist of spouses, relatives, and friends’ caregiving for persons with debilitating illnesses. Despite the amount of time dedicated to parental caregiving, little is known about the experience of this exclusive caregiver group. The aim of this study was to explore and describe the experience of adult children caregiving for aging parents at any stage of health. A qualitative phenomenological approach was used to interview six daughters and one daughter-in-law. Themes were identified and presented through the use of narratives and poetry. The participants expressed they felt unprepared for caregiving and their culture had a direct impact on the expectations of caregiving. A myriad of unpleasant emotions and loss were voiced, yet their outlooks remained extremely positive. The overall health of adult child caregivers needs to be supported to prepare them for what lies ahead with caregiving. Caregivers report their loved one(s) required several hospitalizations, which lead to performing medical/nursing tasks at home. Nursing then has a unique opportunity during discharge preparation, to identify those who need community, state, and faith-based services. Replication is needed to address the limitation of the number of participants, ethnic, and gender diversity.
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Marsack-Topolewski, Christina N., Preethy Sarah Samuel, and Wassim Tarraf. "Empirical evaluation of the association between daily living skills of adults with autism and parental caregiver burden." PLOS ONE 16, no. 1 (January 5, 2021): e0244844. http://dx.doi.org/10.1371/journal.pone.0244844.
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Background Despite the joy of parenting, the burden of daily caregiving for children with autism spectrum disorders (ASD) can be overwhelming and constant. Parents can expect to provide enduring care for their children with ASD. Given that the majority of individuals with autism spectrum disorders (ASD) remain in their family homes well into adulthood, often the need for assistance with activities of daily living (ADLs) is placed on parents. Providing ongoing support to adult children who have difficulty with completing ADLs can increase parental caregiving demands. Therefore, the purpose of this study was to examine the relationship between the ability of adults with ASD to perform ADLs with parental perceptions of caregiver burden. Methods Quantitative analysis of cross-sectional multi-state data gathered electronically using Qualtrics from 320 aging parents of adults with ASD was conducted. Regression models were fit to examine the association of ADL challenges with total caregiver burden and its four domains (emotional, financial, time dependence, and developmental). Results Parental perceptions of caregiver burden decreased, particularly time dependence and developmental burden, when adult children were less dependent in ADLs, even after adjusting for parental health and behavioral challenges. Conclusions Findings support the need for family-centered interventions to improve the capacity of adults with ASD to perform ADLs independently.
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Samus, Quincy M., Danetta Sloan, Jeannie-Marie Leoutsakos, Betty Black, and Deirdre Johnston. "COMMON UNMET NEEDS OF DEMENTIA CAREGIVERS AND HOW THESE DIFFER BY DISEASE STAGE AND RACE." Innovation in Aging 3, Supplement_1 (November 2019): S550. http://dx.doi.org/10.1093/geroni/igz038.2027.
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Abstract This presentation (co-presentation Samus and Sloan) will use combined cross-sectional, baseline data from two intervention studies (n=-642) conducted in Maryland evaluating the impact of dementia care coordination model (MIND at home) to provide a detailed description of common modifiable unmet care needs of family caregivers of community-living persons with dementia (PWD), explore how care needs may differ by the disease stage of the PWD, and presence of racial disparities in care needs. Unmet caregiver needs were identified based on comprehensive in-home assessments using a standardized tool (JHDCNA 2.0) with 6 care domains and 18 items covering caregiver needs. Family caregivers were 77% women; 63 years old (mean); 60% White; and 52% adult children. The most prevalent needs were for education/resources (98%), legal (74%), mental health (44%), and informal support (43%). Needs varied based on dementia severity. African American caregivers (vs. white) had significantly more unmet caregiver needs at baseline (p<.001).
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Smith, Kerry Johanna, Catriona George, and Nuno Ferreira. "Factors emerging from the “Zarit Burden Interview” and predictive variables in a UK sample of caregivers for people with dementia." International Psychogeriatrics 30, no. 11 (March 22, 2018): 1671–78. http://dx.doi.org/10.1017/s1041610218000315.
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ABSTRACTBackground:Caring for persons with dementia (PWD) can create “caregiver burden,” which is associated with negative outcomes for caregivers and PWD. The ZBI (Zarit Burden Interview) is a widely used unitary measure of caregiver burden. However, recent research has found caregiver burden to be multi-dimensional. The purpose of this study was to explore the factor structure of the ZBI within a sample of UK caregivers. A secondary aim was to identify variables that predicted burden dimensions found.Methods:A total of 110 unpaid community caregivers of PWD completed the ZBI. They also completed the EACQ (Experiential Avoidance in Caregiving Questionnaire), DEX (Dysexecutive Questionnaire), PACS (Positive Aspects of Caregiving Scale), and a demographic questionnaire. ZBI data were analyzed via exploratory factor analysis (principal axis factoring). Relationships between burden factors and other variables were studied using Pearson correlations and multiple regression.Results:Analysis identified three burden factors, namely direct impact of caregiving, uncertainty around the future, and frustration/embarrassment. A direct impact of caregiving and frustration/embarrassment has been found previously. Uncertainty over the future is a new factor, which was predicted by adult-child caregiver role, highlighting that spouses and adult children are likely to have different burden experiences. Additionally, uncertainty over the future and frustration/embarrassment were inversely predicted by PACS, suggesting that being mindful of positive aspects of caregiving may function as a protective factor for burden.Conclusions:This study found caregiver burden to be multi-dimensional and uncovered a novel factor in uncertainty over the future, which warrants further exploration. Burden factors were associated with a range of modifiable variables that could be targeted within health and social care interventions to improve outcomes for caregivers and PWD.
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Piazza, Vivian E., Frank J. Floyd, Marsha R. Mailick, and Jan S. Greenberg. "Coping and Psychological Health of Aging Parents of Adult Children With Developmental Disabilities." American Journal on Intellectual and Developmental Disabilities 119, no. 2 (March 1, 2014): 186–98. http://dx.doi.org/10.1352/1944-7558-119.2.186.
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Abstract Among aging parents (mean age = 65, N = 139) of adults with developmental disabilities, we examined the effectiveness of multiple forms of coping with caregiver burden. As expected, accommodative strategies of adapting to stress (secondary engagement), used frequently in later life, buffered the impact of caregiver burden, whereas disengagement and distraction strategies exacerbated the effects of burden on depression symptoms. Most effects were similar for mothers and fathers, and all coping strategies, including active strategies to reduce stress (primary engagement), had greater effects for the parents with co-resident children. Vulnerability to caregiver burden was greatest when the aging parents with co-resident children used disengagement and distraction coping, but those who used engagement coping were resilient.
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Khiewchaum, Rungnapha. "CHILDREN CAREGIVERS’ EXPERIENCES OF OLDER ADULTS WITH DEMENTIA IN CARE TRANSITION: A QUALITATIVE SYSTEMATIC REVIEW." Innovation in Aging 3, Supplement_1 (November 2019): S841. http://dx.doi.org/10.1093/geroni/igz038.3098.
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Abstract Background/Purpose: Young and adult children have experienced caring for people who have been diagnosed with dementia. Caregiving needs affect family members who become the primary caregivers in care transition from hospital to home. This study aims to synthesize primary qualitative research on the experiences of children caregivers of older adults with dementia. Method: This is a systematic review describing young and adult child caregivers’ experiences in caring for patient with dementia in home-based care. Data sources were published literature written in English from CINAHL, Scopus, PubMed, and PsychoINFO (published from January 1976 to October 2018). The thematic synthesis approach was also applied to generate theory generating meta-synthesis research (TGMS). and to describe the process of caring for demented patients by caregivers. Result: Eight primary studies reporting 388 potential studies were included. Four themes emerged: 1) well-being which included encouraging and destructive well-being; 2) role transition which included positive or negative role transformations; 3) caregiver needs which included medical and nursing information or knowledges and health care services/community services; and 4) the challenge of dementia which included symptoms of dementia which were impairing. Conclusion The findings of this meta-synthesis study support evidence of well-being among adult children in caring for people with dementia in transition phases. We present thematic synthesis that could be useful to professionals working with caregivers and patients with dementia. We suggest that research importance should shift towards the development and evaluation of care transitions intervention, especially professionals preparing support after diagnosis.
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Weitzman, Elaine. "More Than Words—The Hanen Program for Parents of Children with Autism Spectrum Disorder: A Teaching Model for Parent-implemented Language Intervention." Perspectives on Language Learning and Education 20, no. 3 (August 2013): 96–111. http://dx.doi.org/10.1044/lle20.3.86.
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There has been an increased emphasis on caregiver-implemented intervention in the field of early intervention. However, this form of intervention can be effective only if the provider has the skills to teach, scaffold and coach the caregiver within a supportive, collaborative partnership. This article describes More Than Words—The Hanen Program for Parents of Children With Autism Spectrum Disorder, a manualized parent-implemented intervention for groups of parents and caregivers. In this program, the speech-pathologist assumes the role of mediator, utilizing specific techniques and activities based on adult education principles, providing a multifaceted, collaborative learning experience that enables parents to become effective language facilitators for their child.
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Morton, Kathryn, Anne-Sophie Emma Darlington, and L. V. Marino. "Protocol for a multicentre longitudinal mixed-methods study: feeding and survivorship outcomes in previously healthy young paediatric Intensive care survivors (the PIES Study)." BMJ Open 10, no. 12 (December 2020): e041234. http://dx.doi.org/10.1136/bmjopen-2020-041234.
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IntroductionAn admission to paediatric intensive care unit (PICU) is associated with multiple physical and environmental stressors, often involving many negative and painful oral experiences. Evidence from children with complex medical conditions suggests that feeding difficulties post-PICU stay are common, causing significant parental anxiety. Adult intensive care unit (ICU) survivor studies suggest feeding issues lasting up to 3 months post-discharge from ICU. There is, however, a paucity of evidence regarding feeding outcomes for previously healthy children following a PICU admission and whether painful oral experiences during an admission contribute to feeding difficulties post-discharge, negatively impacting on parental/caregiver anxiety.Methods and analysisThis longitudinal mixed-methods study will explore the impact of feeding difficulties, identifying any clinical risk factors during the first 6 months of PICU discharge in previously healthy young children (≤4 years). Parents/caregivers of children will be asked to complete questionnaires relating to: feeding difficulties, parental/caregiver stress, and child and parental/caregivers’ feeding behaviours at the point of PICU discharge, 1, 3 and 6 months post-discharge. Parents/caregivers will be invited to participate in qualitative semistructured interviews at 3 and 6 months post-PICU discharge exploring parental/caregiver experiences of feeding their child after PICU. Statistical analysis of the survey data will consist of descriptive and inferential statistics, plus qualitative analysis of any free text comments using thematic analysis.Ethics and disseminationThis study will provide an insight and increase our understanding of the prevalence of feeding difficulties in previously healthy children admitted to PICU and parental/caregiver experiences. Multiple methods will be used to ensure that the findings are effectively disseminated to service users, clinicians, policy and academic audiences. The study has full ethical approval from the National Health Service Research Ethics Committee (Ref: 20/YH/0160) and full governance clearance.
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Kahn, Phoebe V., Chloe O. Zimmerman, Heather A. Wishart, Robert B. Santulli, and Perla Werner. "Caregiver Stigma and Burden in Alzheimer's Disease: A Comparison of Spousal and Adult Children Caregivers." American Journal of Geriatric Psychiatry 22, no. 3 (March 2014): S86—S87. http://dx.doi.org/10.1016/j.jagp.2013.12.098.
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Mårtensson, Erika, Oscar Blomberg, Danelle Pettman, Renita Sörensdotter, Louise von Essen, and Joanne Woodford. "Psychological interventions for depression among informal caregivers of older adult populations: protocol of a systematic review and meta-analysis of randomised controlled trials." BMJ Open 10, no. 9 (September 2020): e036402. http://dx.doi.org/10.1136/bmjopen-2019-036402.
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IntroductionIncreased life expectancy has led to an increased demand for family members to provide informal care for their older relatives in the home. Many studies suggest informal caregivers are at greater risk of experiencing symptoms of depression. However, there is a lack of research examining the effectiveness of psychological interventions targeting these symptoms alongside clinical and methodological moderators potentially associated with intervention effectiveness. This review aims to address this gap and will inform the development of a psychological intervention targeting depression among adult-child caregivers of older parents, given many studies show that among informal caregivers of older adults, adult children experience specific difficulties and needs for psychological support. Further, the lack of studies targeting adult children specifically necessitates conducting this review targeting caregivers of older adults in general.Methods and analysisRandomised controlled trials of psychological interventions targeting symptoms of depression among informal caregivers will be identified via a systematic search of electronic databases (PubMed, Cumulative Index to Nursing and Allied Health Literature, Excerpta Medica DataBase, PsycINFO, Cochrane Library and Web of Science) and supplemented by handsearching of previous systematic reviews, reference and forward citation checking, and expert contact. If possible, a meta-analysis will be conducted to examine the: (1) effectiveness of psychological interventions for depression among informal caregivers of older adults, (2) effectiveness of psychological interventions for secondary outcomes such as anxiety, stress, caregiver burden, psychological distress, quality of life, well-being and self-efficacy and (3) moderating effects of clinical and methodological factors on effectiveness.Ethics and disseminationEthical approval will not be necessary for this study given primary data will not be collected. Results will inform the development of a psychological intervention for adult-child caregivers of older parents and will be disseminated through publication in peer-reviewed journals and conference presentations.PROSPERO registration numberCRD42020157763.
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Tomette, Alisa, J. Neil Henderson, Amanda Hass, Linda D. Carson, and Kama King. "Parental Stress as a Child With Diabetes Transitions From Adolescence to Emerging Adulthood." Journal of Patient Experience 7, no. 3 (May 2, 2019): 365–71. http://dx.doi.org/10.1177/2374373519842963.
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This study examined parental and caregiver distress among families caring for children with type 1 diabetes as the child transitions into Emerging Adulthood. More than 96 hours of semistructured interviews were conducted with 19 adult caregivers including parents, grandparents, and other adult family members of 10 children. Each research partner participated in multiple face-to-face, 1- to 1.5-hour long-evolving interviews over the course of 4.5 years. Paradoxically, caregivers were found to experience significant increase in distress as their child with diabetes entered the developmental stage of Emerging Adulthood, 18 to 25 years old, by which time they should be masters of self-care, and parental distress should begin to decline. This increase in familial distress was associated with the emerging adults leaving the home, being unable to maintain an acceptable level of self-care, and experiencing declining health, frequent visits to the emergency department, and repeated hospitalizations. These findings suggest that parental distress from caring for a child with diabetes continues as the child ages, matures, and transitions into adulthood and may be exacerbated when the emerging adult with type 1 diabetes leaves the home and the direct observation and care of the parent.
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Liang, Shuting, and XinQi Dong. "The Association Between Caregiving Burden and Depressive Symptoms Among U.S. Chinese Adult Children." Innovation in Aging 4, Supplement_1 (December 1, 2020): 360. http://dx.doi.org/10.1093/geroni/igaa057.1158.
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Abstract Existing research has showed the impact of caregiving burden on physical and psychological outcomes among adult children, but less have examined its association among Chinese immigrants in the US. This research will present the association between caregiving burden and depressive symptoms among U.S. Chinese adult children. Cross-sectional data were drawn from the PIETY study with 547 Chinese adult children aged over 21 years old in the greater Chicago area between 2012-2014. Caregiving burden was assessed by 24-item caregiver burden developed by Novak and Guest and is composed of five factors: time-dependence, developmental, physical, social, and emotional burden. Depressive symptoms were assessed by the nine-item Patient Health Questionnaire. Logistic regression analysis was conducted. In our sample, 241 (44%) adult children had depressive symptoms and 174 (72.2%) were female. In the result of multivariate analysis, after adjusting for covariates, developmental burden (Odds ratio [OR] 1.13 [1.05-1.21]), physical burden (OR 1.17 [1.06-1.28]), social burden (OR 1.20 [1.08-1.32]), and emotional burden (OR 1.22 [1.11-1.35]) were positively associated with reporting any depressive symptoms. However, the time-dependence burden was not associated with depressive symptoms. The findings highlight the potential impact of caregiving burden on depressive symptoms and how different domains of caregiving burden are associated with depressive symptoms among Chinese caregivers in the U.S. Future research should include multidimensional social supports or acculturation as underlying factors which might affect the relationship between caregiver burden and depressive symptoms across Chinese community in the US.
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Lee, Jung-Ah, Priscilla Kehoe, and Lisa Gibbs. "A HOME-VISIT PILOT INTERVENTION TO PROMOTE COMMUNICATION SKILLS AND WELL-BEING FOR DEMENTIA FAMILY CAREGIVERS." Innovation in Aging 3, Supplement_1 (November 2019): S676. http://dx.doi.org/10.1093/geroni/igz038.2497.
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Abstract Dementia takes a significant toll on caregivers resulting in their suffering from chronic stress and depression due to responsibility for care for persons with dementia (PWD). Behaviors of PWD could be aggravated by inappropriate responses by family caregivers such as correcting PWD’s memories. The study purpose is to examine the feasibility of a home-visit-based intervention designed to promote communication skills with PWD and well-being in family caregivers. This pilot study used a single-arm experimental pre-post design to test the feasibility of 4 weekly home visits for 13 female family caregivers in Southern California (spouse, n=7; adult children, n=6; mean age=64.3, ranging 46-82). Trained home visitors used video scenarios for behavioral education for caregivers. All caregivers completed the entire home visit program. Significantly caregiver burden was decreased from baseline (M(SD)=51.38(4.58)) to follow-up at 5 weeks (M=43.31(5.67), Wilcoxon signed rank test: p=.04). Additionally, caregiver-reported PWD’s negative behaviors were reduced from baseline to follow-up (Mbase=22.31(3.52), Mfolllowup=19.31(4.4), p=.13). There were other improvements (non-significant) in greater caregiver self-efficacy and less depressive symptoms from baseline to follow-up. Caregiver satisfaction with the intervention was high (M=4.6(0.65) of 5). Qualitatively, participants appreciated the home visits for educational sessions and welcomed the empathy provided. Caregivers expressed better communications and responsiveness to the PWDs. The results showed the home-visit-based caregiver intervention was feasible and had a potential effectiveness on reduction of caregiver burden and possibly on self-efficacy and well-being. A larger-scale study will be needed to demonstrate long term positive effects on caregiver interactive skills and their well-being.
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Todd, Kevin E., Meghan E. Mcgrady, Anne Blackmore, Carrie Hennessey, and Lori Luchtman-Jones. "Assessing Barriers to Medication Adherence in Pediatric and Adolescent and Young Adult (AYA) Patients on Anticoagulation." Blood 136, Supplement 1 (November 5, 2020): 9–10. http://dx.doi.org/10.1182/blood-2020-139660.
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Background: Medication nonadherence rates as high as 50-75% have been widely reported in children and adolescents with chronic medical conditions. Anticoagulation nonadherence is associated with increased morbidity and mortality from hemorrhagic and thrombotic complications, reported mostly in older adult populations. As direct oral anticoagulant use increases, it is critical that pediatric clinicians understand the prevalence, adverse sequelae, and predictors of nonadherence for various anticoagulants prescribed for children and young adults to facilitate self-management in this population. To begin to address these critical knowledge gaps, this study explored the frequency of reported barriers to anticoagulation adherence and the relationship between reported barriers and adherence among a cohort of children and young adults who were prescribed anticoagulants through a pediatric thrombosis clinic. Methods: Data for this abstract were collected as part of a quality improvement (QI) initiative in the pediatric thrombosis clinic from May 2019 to November 2019. This QI initiative included the administration of a self-report measure which asked families to rate the presence/absence of 19 barriers to adherence and respond to two items assessing adherence ("How many anticoagulation doses did you/your child miss in the past 7 days?"; "Did you/your child miss any anticoagulation doses in the past month?"). Patients aged > 10 years (yr.) and/or their caregivers (for patients 0-17 yr.) visiting the clinic for anticoagulation follow-up completed the measure. With IRB approval, results from 161 anonymous measures from 130 families (n = 37 caregivers; n = 62 patients; n = 31 patient/caregiver dyads) were analyzed. Descriptive statistics were used to summarize the most frequent barriers, rates of adherence, and concordance of barriers within patient/caregiver dyads. Linear regression was used to explore relationships between barriers and adherence after controlling for medication administration type (injections versus oral). To ensure only one measure per family was included in this analysis, the regression was run on the subset of measures completed by caregivers of children < 18 yr. and patients ≥ 18 yr. (n = 105 [37 caregivers + 62 patients + 31 caregivers from patient/caregivers dyad = 130 families; 130 - 25 families with missing adherence data = 105 families]). Results: Of 161 reporters, 120 reported at least 1 barrier. The most common barriers were medication side effects (n = 44), alterations in lifestyle secondary to medication (n = 44) and forgetting to take the medications (n = 37). The distributions of barriers by reporter and medication type are illustrated in Figure 1. Of 31 dyads, 26 reported 1 or more barriers. Only 6 caregiver/child dyads reported the same set of barriers. The remaining 77% (n = 20) of caregivers endorsed different barriers than their children. On average, patients and caregivers reported 1.85 barriers (SD = 1.95, range 0 - 10) and that they/their child took 96% of prescribed doses (SD= 9%, range = 71 - 100%). The linear regression was significant (F(2, 102) = 4.19, p = 0.02, R2 = 0.08). After controlling for medication type (p = 0.06), a greater number of barriers was significantly associated with lower adherence (t = -2.63, p = 0.01). Every one unit increase in total barriers (1 additional barrier reported) was associated with a decrease of .26% in adherence. Discussion: Although self-reported adherence was high, 75% of patients and caregivers reported 1 or more barriers to adherence. A greater number of barriers is associated with lower adherence, regardless of medication route, suggesting that addressing reported barriers might improve adherence. The spectrum of reported barriers was diverse, differing even within patient and caregiver dyads. Therefore, it is important to evaluate both patients and caregivers to fully assess the burden of barriers. Future studies are needed to evaluate the impact of addressing barriers and the relationship between anticoagulation adherence, barriers, and health outcomes. Figure 1 Disclosures Luchtman-Jones: Corgenix: Other: Provided discounted kits for study; Accriva Diagnostics: Other: Provided kits for study.
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Lee, Yoon-Ro, and Kyu-Taik Sung. "Cultural Influences on Caregiving Burden: Cases of Koreans and Americans." International Journal of Aging and Human Development 46, no. 2 (January 1, 1998): 125–41. http://dx.doi.org/10.2190/pm2c-v93r-ne8h-jwgv.
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This study compared cultural influences on caregiver burdens of Korean adult children and American adult children caring for parents with dementia, and identified culturally specific values, norms, and customs associated with low or high burden. The findings suggested that the low burden of the Korean caregivers was associated with extended family support and high filial responsibility while that of the American caregivers was related to the use of formal services and high gratification from caregiving. Obversely, the high burden of the Koreans was seen to be associated with limited formal services outside the family and low gratification from caregiving for in-laws while that of the Americans was suggested to be due to limited extended family support and low filial responsibility. Needs for culturally-appropriate interventions are discussed.
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Shankar, Janki, David Nicholas, Martin Mrazik, Earle Waugh, Shawn Tan, Rossalyn Zulla, Liana Urichuk, and Sue Paranica. "Transition From Pediatric to Adult Services: Challenges for Family Caregivers of Young Adults With Traumatic Brain Injury." SAGE Open 8, no. 4 (October 2018): 215824401880795. http://dx.doi.org/10.1177/2158244018807954.
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Family caregivers are the main source of support for survivors of traumatic brain injury (TBI) while they transition from pediatric to adult care service and support systems. Yet there is little research that examines the needs of these caregivers during the transition phase. The aim of this qualitative phenomenological study was to examine the lived experiences of family caregivers of young adults with TBI who had recently transitioned from services for children and adolescents to adult care service and supports. The study sample comprised 15 family caregivers of young adult TBI survivors who had transitioned to adult services in the last 5 years. They were recruited from two large hospitals and a caregiver support center in a city in Western Canada. Semistructured interviews were conducted with the caregivers and the data were analyzed using Colaizzi’s approach in developing an essential structure of the phenomenon of caregiving. Fifteen themes emerged from the analysis and these are discussed under two broad domains: (a) caregivers’ experiences and challenges with their relative at the time of transition; (b) caregivers’ challenges with services and supports systems during transition. Findings suggest that there is a wide gap between what caregivers need and what is available to them to support their young adult relative through the transition process and beyond. Most caregivers reported that the transition phase is overwhelming and has a profound and pervasive impact on their lives. Implications of the findings and recommendations for policy and practice are discussed.
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Kavanaugh, Melinda S., Chi C. Cho, Megan Howard, Dominic Fee, and Paul E. Barkhaus. "US data on children and youth caregivers in amyotrophic lateral sclerosis." Neurology 94, no. 14 (March 18, 2020): e1452-e1459. http://dx.doi.org/10.1212/wnl.0000000000009217.
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ObjectiveAn estimated 1.4 million young caregivers (<19 years of age) in the United States provide care to ill family members yet remain hidden from state and national caregiving programs and services, including amyotrophic lateral sclerosis (ALS) caregiving services. Given the intensive care needs and acuity of ALS, appreciation of the young caregiver experience within the family context may have a significant impact on patient and family quality of life. This article seeks to identify family and youth caregiver characteristics and perceptions of care through interviews with 38 youth caregivers and their families with ALS.MethodsOnline adult surveys and follow-up youth interviews were conducted with families with ALS across the United States in this cross-sectional study. Participants were accessed through chapters of the ALS Association. Both thematic content analysis and descriptive statistics were used.ResultsYouth caregivers (n = 38) ranged in age from 8 to 18 years and spent an average of 5 h/d providing care for an average of 12 tasks. Persons with ALS relied on youth primarily due to cost and identified complex feelings about relying on youth caregivers, including feeling like a failure, guilty, but proud.ConclusionYouth are intricately involved in all areas of caregiving in ALS. They are isolated and have little training or guidance in care, yet they are able to identify ways to manage their care burden. Results provide clear implications for health care professionals in designing best care and support practices for persons with ALS and their young caregivers.
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Bueno, Michael, and Jo-Ana Chase. "Gender Differences in Caregiving of Older Adults: A Systematic Review of the Literature." Innovation in Aging 4, Supplement_1 (December 1, 2020): 150–51. http://dx.doi.org/10.1093/geroni/igaa057.491.
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Abstract Caregivers of older adults with chronic illness provide essential care that benefits individuals and society. Many factors influence health outcomes related to the caregiving role. The purpose of this review is to explore how caregiver health outcomes may vary by gender. Data sources include CINAHL, Google Scholar, Google and PsychINFO. Eligible studies focused on gender-based differences in psychological and emotional outcomes of primary informal or familial caregivers (ie, spouses, children, grandchildren, nieces, nephews, neighbors, and friends) of an older adult with chronic illness. The Caregiver Identity Theory (CIT) guided this study. Twelve studies were eligible for this review. Consistent with the CIT, negative outcomes are associated with changing role identity throughout the care recipient’s disease progression, and these outcomes differ between genders. Women tended to experience higher overall burden, stress, anxiety, shame and role strain; however, some studies found that men may be affected more during the initial transition into the caregiver role. Methodological limitations of primary research in this area included the use of cross-sectional design, poor generalization to US populations since most studies were conducted outside of the US, and disproportionately fewer male participants across studies. Overall, gender differences in health outcomes among caregivers exist, and other variables relating to gender, such as kinship and age, may also be important factors. Findings suggest health professionals should create individualized engagement, communication, and training strategies with considerations for gender differences in design. Future studies including more male caregivers and more diverse participants is warranted.
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Archer, Jesse, Wendy Reiboldt, Maria Claver, and John Fay. "Caregiving in Quarantine: Evaluating the Impact of the Covid-19 Pandemic on Adult Child Informal Caregivers of a Parent." Gerontology and Geriatric Medicine 7 (January 2021): 233372142199015. http://dx.doi.org/10.1177/2333721421990150.
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Informal caregivers form a shadow workforce projected to become even more essential as the U.S. population ages. Most are untrained in the role and manage caregiving with competing life demands that compound burden and threaten the welfare of the older adults in their care. The 12-item Zarit Burden Interview measure was employed to investigate differences in subjective burden before and during the Covid-19 pandemic among adult children who are primary informal caregivers of a parent. Additionally, this study explored family composition to determine if the presence of siblings or dependent children affected burden scores. A convenience sample ( N = 77) reported significantly more burden since the onset of the Covid-19 pandemic when compared to pre-pandemic burden. Since the pandemic began, those with living siblings reported less burden than those without siblings, while there was no difference in burden between sandwich generation caregivers and those providing care only for a parent. This study’s results point to the role family plays in resilience during a crisis and emphasizes the need to promote efficient supports and networks to alleviate caregiver burden.
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Berridge, Clara, and Terrie Fox Wetle. "Why Older Adults and Their Children Disagree About In-Home Surveillance Technology, Sensors, and Tracking." Gerontologist 60, no. 5 (May 18, 2019): 926–34. http://dx.doi.org/10.1093/geront/gnz068.
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Abstract Background and Objectives Despite the surveilling nature of technologies that allow caregivers to remotely monitor location, movements, or activities, the potential differences in comfort with remote monitoring between caregivers and care recipients have not been examined in depth. On the dyad and aggregate level, we compare preferences of older adult women and their adult children for three remote monitoring technologies. Their assessments of each technology’s impact on privacy, safety, independence, freedom, relationship with family member, social life, and identity are also compared. Research Design and Methods This dyadic study used cognitive-based interview probing and value-centered design methods. Twenty-eight individual, in-depth, structured interviews were conducted with 18 women who are Meals on Wheels clients and 10 of their adult children. Results Meals on Wheels participants reported multiple chronic conditions and an average of 1.7 ADL and 3.3 IADL difficulties; two thirds were enrolled in Medicaid. Adult children preferred each technology more than their mothers did and underestimated both their mothers’ ability to comprehend the functions of the technologies and the importance of engaging them fully in decision making. Most were confident that they could persuade their mothers to adopt. For both groups, privacy was the most-cited concern, and participants perceived significant overlap between values of privacy, independence, identity, and freedom. Discussion and Implications Studying privacy in isolation overlooks privacy’s instrumental role in enabling other values. Shared decision-making tools are needed to promote remote monitoring use consistent with older adults’ values and to prevent conflict and caregiver overreach.
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Savundranayagam, M. Y., R. J. V. Montgomery, and K. Kosloski. "A Dimensional Analysis of Caregiver Burden Among Spouses and Adult Children." Gerontologist 51, no. 3 (December 6, 2010): 321–31. http://dx.doi.org/10.1093/geront/gnq102.
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Byrne, Mary W., Elana Evan, Lorie S. Goshin, Matthew D. Erlich, Jackie H. J. Kim, John M. Saroyan, and Lonnie K. Zeltzer. "Parent self-efficacy for managing pain in seriously ill children and adolescents nearing end of life." Palliative and Supportive Care 9, no. 2 (May 4, 2011): 137–47. http://dx.doi.org/10.1017/s1478951511000010.
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AbstractObjective:Using data from a multi-site study of parent–child symptom reporting concordance, this secondary analysis explored the role of parent self-efficacy related to pain management for seriously ill school-age children and adolescents.Method:In the initial study, 50 children and adolescents who were expected to survive 3 years or less were recruited along with their parent/primary caregiver. Parent self-report data were used in this secondary analysis to describe parent self-efficacy for managing their child's pain, caregiver strain, mood states, and perception of the child's pain; to explore relationships among these variables; and to determine predictors of greater self-efficacy.Results:Parents expressed a wide range of self-efficacy levels (Chronic Pain Self-Efficacy Scale; possible range 10–100, mean 76.2, SD 14.7) and higher levels on average than reported previously by family caregivers of adult patients. Caregiver Strain Index scores were markedly high (possible range 0–13, mean 8.1, SD 3.8) and inversely correlated with self-efficacy (r = −0.44, p = 0.001). On the Profile of Mood States parents reported more negative moods (t = 4.0, p < 0.001) and less vigor (t = −5.0, p < 0.001) than adults in a normative sample, yet vigor rather than mood disturbance predicted self-efficacy. With the exception of child age, self-efficacy was not associated with demographics (child gender, ethnicity, household income, parent age, education, family size) or with the diagnostic groups (primarily cardiac and oncologic) comprising the sample. Younger child age, less caregiver strain, more parent vigor, and parent perception that child is without pain predicted more than half of the variance in parent self-efficacy (R2 = 0.51).Significance of results:Findings advance knowledge of parent self-efficacy in managing the pain of a child with life-threatening illness. Results can be used to design supportive interventions enhancing parents’ caregiving roles during their child's last stages of life.
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Koh, Su-Jin, Shinmi Kim, and JinShil Kim. "End-of-life care decisions using Korean advance directives among cancer patient-caregiver dyads." Journal of Clinical Oncology 34, no. 26_suppl (October 9, 2016): 11. http://dx.doi.org/10.1200/jco.2016.34.26_suppl.11.
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11 Background: The Korean advance directives (K-ADs) consist of a value statement, treatment directives (cardiopulmonary resuscitation [CPR], preferences for artificial ventilation, tube feeding, and hospice care). K-ADs can facilitate a patient’s decision-making for end-of-life (EOL) care. This study aims to examine the extent to which patient-caregiver dyads agreed on decisions for EOL care using the K-ADs. Methods: Using a descriptive study design, 81 cancer patients were invited to participate. The final sample consisted of 44 patient-caregiver dyads who completed K-ADs; 36 (44.4%) of the initial 81 patients declined to participate. Results: Patient participants had different cancerdiagnoses: 29.5% colorectal cancer, 29.5% breast, and 15.9% liver/biliary tract cancers; 59% of the sample had advanced stage cancer. Spouse (70.5%) and adult children of the patient (20.4%) were primary caregivers with perceived bonding rated as fair (31.8%) or good (65.9%). Rejection of K-ADs was mainly because of difficulty in deciding EOL care (50%). Comfort in dying was the most common theme of the value statement for patients (73.8%) and caregivers (66.7%). For treatment directives, dyads advocated for hospice care (66.7%) and reduced support for aggressive treatments of CPR or artificial ventilation, k = .43, p = .004 and k = .28, p = .046, respectively. These approaches showed significantly mild to moderate concordance among the dyads. Sixteen out of the 21 dyads identified their spouses as a proxy, with others designating their adult children. Conclusions: The findings of the study are exploratory but suggest the need for ongoing EOL discussion where patient-caregiver dyads are encouraged to participate in the decision-making for EOL care.
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Tadros, Eman, Kerrie Fanning, Sarah Jensen, and Julie Poehlmann-Tynan. "Coparenting and Mental Health in Families with Jailed Parents." International Journal of Environmental Research and Public Health 18, no. 16 (August 18, 2021): 8705. http://dx.doi.org/10.3390/ijerph18168705.
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The number of families affected by parental incarceration in the United States has increased dramatically in the past three decades, with primarily negative implications for adult mental health and child and family well-being. Despite research documenting increased strain on coparenting relationships, less is known regarding the relation between adult mental health and coparenting quality. This study investigated coparenting in families with young children currently experiencing parental incarceration. In a diverse sample of 86 jailed parent–caregiver dyads (n = 172), this analysis of a short-term longitudinal study examined the links among jailed parents’ and children’s at-home caregivers’ externalizing mental health symptoms and perceived coparenting alliance quality using the Actor–Partner Interdependence Model. Analyses using structural equation modeling revealed a medium sized negative partner effect for externalizing behaviors on coparenting alliance for jailed parents, wherein caregivers increased externalizing symptoms related to jailed parents’ lower reported coparenting quality. Caregiver–partner effects and both actor effects resulted in small effects. These findings highlight the roles of mental health and coparenting relationship quality when a parent is incarcerated and contribute to the existing literature on incarcerated coparenting, with implications for theory and practice.
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Roland, Kaitlyn P., and Neena L. Chappell. "Relationship and stage of dementia differences in caregiver perspectives on the meaning of activity." Dementia 16, no. 2 (July 27, 2016): 178–91. http://dx.doi.org/10.1177/1471301215586287.
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Caregivers of persons living with dementia (PWD) taking cholinesterase inhibitors, who care 3 + h over three days/week, were interviewed. This study uses thematic content analysis to compare responses to the open-ended question “ What do you believe getting involved in activities outside the home means for someone with dementia?” in spouse ( n = 613) and adult–children ( n = 260) caregivers, and across mild ( n = 314) and moderate–severe stages ( n = 280). For adult–children caregivers, activity participation promotes independence in their parents. Spouses describe activity in the context of their relationship with the PWD, and the experience is framed around their continued social roles as a couple. Mild-stage caregivers report the difficulty and negative outcomes (e.g. frustration, stigma) of engaging in activity, while moderate–severe caregivers discuss activity as preserving abilities in PWD and providing connection to cohort. This may indicate areas for improved activity provision and support for spouse (i.e. emotional) and adult–children (i.e. resources) caregivers across dementia stages.
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Laratta, Stefania, Lucia Francesca Lucca, Paolo Tonin, and Antonio Cerasa. "Factors Influencing Burden in Spouse-Caregivers of Patients with Chronic-Acquired Brain Injury." BioMed Research International 2020 (July 1, 2020): 1–6. http://dx.doi.org/10.1155/2020/6240298.
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In this cross-sectional study, we assess associated factors of burden in spouse-caregivers of patients with acquired brain injury (ABI) in the chronic phase. 35 spouse-caregivers (71% female, mean age±SD: 55.7±11.1y) of patients with mild/moderate ABI (29% female, mean age±SD: 57.5±10.7y), admitted to the intensive rehabilitation unit of the Institute S. Anna (Crotone, Italy) between January 2013 and December 2017, were contacted 2 years postinjury and asked to complete a series of questionnaires. The outcome measure was the Caregiver Burden Inventory (CBI) test, while several demographical and clinical data were considered as predictive factors. Two years after injury, a high level of burden was reported in 34.2% of spouse-caregivers. Stepwise multiple linear regression analyses revealed that caring for a patient with more severe disability (as measured by the Barthel Index scale) and the family life cycle (from the initial phase of engagement to marriage with adult children) explain the vast majority of variance for higher caregiver burden. The functional clinical status and the stages through which a family may pass over time were identified as areas in which the spouse-caregiver of ABI patients experienced high levels of burden in the chronic phase.
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Hudson, Janella, Rachel Ungar, Laurie Albright, Rifky Tkatch, James Schaeffer, and Ellen R. Wicker. "Older Adult Caregivers’ Experiences in an Online, Interactive Mindfulness Intervention." Journal of Evidence-Based Integrative Medicine 25 (January 1, 2020): 2515690X2096065. http://dx.doi.org/10.1177/2515690x20960659.
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Background. While today’s older adults experience longevity, they often manage several chronic conditions and increasingly serve as informal caregivers for aging parents, children with life-long disabilities, and spouses. Older adult caregivers managing personal chronic illness often experience significant psychosocial hardships. Objective. The primary purpose of this study was to explore the experiences of older adult caregivers in an online, interactive mindfulness intervention. Methods. Self-reported older caregivers who participated in an online-based mindfulness program (n = 20) were recruited for semi-structured interviews. Participants were asked to provide feedback about any previous experience with mindfulness and/or meditation, hopes or goals held prior to the start of the program, desired expectations, motivation for joining, impressions of sessions, most beneficial topics, potential application of content, and any perceived effects. Participants’ responses were analyzed using qualitative content analysis. Results. Five themes emerged from the analysis: Managing the Comprehensive Effects of Caregiving, Openness to Meditation and Mindfulness, Course Engagement and Incremental Growth, Building Rapport through Shared Experiences, and Ongoing Application and Opportunities for Refinement. Participants reported both short-term post-exercise benefits such as increased calm, relaxation, and stress relief, as well as long-term positive outcomes. Notably, participants found the program’s unique interactive feature to be particularly beneficial as a form of perceived social support. Conclusions. Caregivers for older adults may derive benefit and potentially experience reduced subjective caregiver burden as a result of participating in a Mindfulness-Based Stress Reduction (MBSR) program, particularly when the program is augmented with a self-compassion approach and perceived social support.