Browsing by Subject "Caregiver burden"
Now showing 1 - 8 of 8
Results Per Page
Sort Options
Item Acceptance and commitment therapy for patient fatigue interference and caregiver burden in advanced gastrointestinal cancer: Results of a pilot randomized trial(Sage, 2022) Mosher, Catherine E.; Secinti, Ekin; Wu, Wei; Kashy, Deborah A.; Kroenke, Kurt; Bricker, Jonathan B.; Helft, Paul R.; Turk, Anita A.; Loehrer, Patrick J., Sr.; Sehdev, Amikar; Al-Hader, Ahmad A.; Champion, Victoria L.; Johns, Shelley A.; Psychology, School of ScienceBackground: Fatigue often interferes with functioning in patients with advanced cancer, resulting in increased family caregiver burden. Acceptance and commitment therapy, a promising intervention for cancer-related suffering, has rarely been applied to dyads coping with advanced cancer. Aim: To examine the feasibility, acceptability, and preliminary efficacy of acceptance and commitment therapy for patient-caregiver dyads coping with advanced gastrointestinal cancer. Primary outcomes were patient fatigue interference and caregiver burden. Design: In this pilot trial, dyads were randomized to six weekly sessions of telephone-delivered acceptance and commitment therapy or education/support, an attention control. Outcomes were assessed at baseline and at 2 weeks and 3 months post-intervention. Setting/participants: Forty patients with stage III-IV gastrointestinal cancer and fatigue interference and family caregivers with burden or distress were recruited from two oncology clinics and randomized. Results: The eligibility screening rate (54%) and retention rate (81% at 2 weeks post-intervention) demonstrated feasibility. At 2 weeks post-intervention, acceptance and commitment therapy participants reported high intervention helpfulness (mean=4.25/5.00). Group differences in outcomes were not statistically significant. However, when examining within-group change, acceptance and commitment therapy patients showed moderate decline in fatigue interference at both follow-ups, whereas education/support patients did not show improvement at either follow-up. Acceptance and commitment therapy caregivers showed medium decline in burden at 2 weeks that was not sustained at 3 months, whereas education/support caregivers showed little change in burden. Conclusions: Acceptance and commitment therapy showed strong feasibility, acceptability, and promise and warrants further testing.Item Aging and Post-Intensive Care Syndrome–Family (PICS-F): A Critical Need for Geriatric Psychiatry(Elsevier, 2019) Serrano, Patricia; Kheir, You Na P.; Wang, Sophia; Khan, Sikandar; Scheunemann, Leslie; Khan, Babar; Psychiatry, School of MedicinePost-intensive care syndrome–family (PICS-F) describes the psychological symptoms that affect the family members of patients hospitalized in the intensive care unit (ICU) or recently discharged from the ICU. Geriatric psychiatrists should be concerned about PICS-F for several reasons. First, ICU hospitalization in older adults is associated with higher rates of cognitive and physical impairment, compared to older adults hospitalized in non-ICU settings or dwelling in the community. This confers a special burden on the caregivers of these older ICU survivors compared to other geriatric populations. Second, as caregivers themselves age, caring for this unique burden can be more challenging compared to other geriatric populations. Third, evidence for models of care centered on patients with multimorbidity and their caregivers is limited. A deeper understanding of how to care for PICS and PICS-F may inform clinical practice for other geriatric populations with multimorbidity and their caregivers. Geriatric psychiatrists may play a key role in delivering coordinated care for PICS-F by facilitating timely diagnosis and interdisciplinary collaboration, advocating for the healthcare needs of family members suffering from PICS-F, and leading efforts within healthcare systems to increase awareness and treatment of PICS-F. This clinical review will appraise the current literature about the impact of critical illness on the family members of ICU survivors and identify crucial gaps in our knowledge about PICS-F among aging patients and caregivers.Item Conceptualizing care partners' burden, stress, and support for reintegrating Veterans: a mixed methods study(Frontiers Media, 2024-02-19) Rattray, Nicholas A.; Flanagan, Mindy; Mann, Allison; Danson, Leah; Do, Ai-Nghia; Natividad, Diana; Spontak, Katrina; True, Gala; Medicine, School of MedicineBackground: People who support Veterans as they transition from their military service into civilian life may be at an increased risk of psychological distress. Existing studies focus primarily on paid family caregivers, but few studies include spouses and informal non-family "care partners." We sought to identify key challenges faced by care partners of Veterans with invisible injuries. Methods: Semi-structured interviews were conducted with 36 individuals involved in supporting a recently separated US military Veteran enrolled in a 2-year longitudinal study. CPs completed validated measures on perceived stress, caregiving burden, quality of their relationship, life satisfaction, and flourishing. Independent t-tests were used to compare cases in these groups on caregiving burden, quality of their relationship, life satisfaction, and flourishing. Care partners were categorized as reporting high and low levels of stress. Exemplar cases were used to demonstrate divergences in the experiences of CPs with different levels of stress over time. Results: Care partners reported shifts in self-perception that occurred from supporting a Veteran, emphasizing how they helped Veterans navigate health systems and the processes of disclosing health and personal information in civilian contexts. Exemplar cases with high and low burdens demonstrated divergent experiences in self-perception, managing multi-faceted strain, and coping with stress over time. Case studies of specific care partners illustrate how multi-faceted strain shifted over time and is affected by additional burdens from childcare, financial responsibilities, or lack of education on mental health issues. Conclusions: Findings suggest the unique needs of individuals who support military Veterans with invisible injuries, highlighting variations and diachronic elements of caregiving. This sample is younger than the typical caregiver sample with implications for how best to support unpaid care partners caring for Veterans in the early to mid-period of their use of VA and civilian health services.Item Effect of diabetes on caregiver burden in an observational study of individuals with Alzheimer's disease(BioMed Central, 2016-05-03) Lebrec, Jeremie; Ascher-Svanum, Haya; Chen, Yun-Fei; Reed, Catherine; Kahle-Wrobleski, Kristin; Hake, Ann Marie; Raskin, Joel; Naderali, Ebrahim; Schuster, Dara; Heine, Robert J.; Kendall, David M.; Department of Neurology, IU School of MedicineBACKGROUND: The burden on caregivers of patients with Alzheimer's disease (AD) is associated with the patient's functional status and may also be influenced by chronic comorbid medical conditions, such as diabetes. This post-hoc exploratory analysis assessed whether comorbid diabetes in patients with AD affects caregiver burden, and whether caregivers with diabetes experience greater burden than caregivers without diabetes. Caregiver and patient healthcare resource use (HCRU) were also assessed. METHODS: Baseline data from the GERAS observational study of patients with AD and their caregivers (both n = 1495) in France, Germany and the UK were analyzed. Caregiver burden was assessed using the Zarit Burden Interview (ZBI). Caregiver time on activities of daily living (ADL: basic ADL; instrumental ADL, iADL) and supervision (hours/month), and caregiver and patient HCRU (outpatient visits, emergency room visits, nights hospitalized) were assessed using the Resource Utilization in Dementia instrument for the month before the baseline visit. Regression analyses were adjusted for relevant covariates. Time on supervision and basic ADL was analyzed using zero-inflated negative binomial regression. RESULTS: Caregivers of patients with diabetes (n = 188) were younger and more likely to be female (both p < 0.05), compared with caregivers of patients without diabetes (n = 1307). Analyses showed caregivers of patients with diabetes spent significantly more time on iADL (+16 %; p = 0.03; increases were also observed for basic ADL and total caregiver time but did not reach statistical significance) and had a trend towards increased ZBI score. Patients with diabetes had a 63 % increase in the odds of requiring supervision versus those without diabetes (p = 0.01). Caregiver and patient HCRU did not differ according to patient diabetes. Caregivers with diabetes (n = 127) did not differ from those without diabetes (n = 1367) regarding burden/time, but caregivers with diabetes had a 91 % increase in the odds of having outpatient visits (p = 0.01). CONCLUSIONS: This cross-sectional analysis found caregiver time on iADL and supervision was higher for caregivers of patients with AD and diabetes versus without diabetes, while HCRU was unaffected by patient diabetes. Longitudinal analyses assessing change in caregiver burden over time by patient diabetes status may help clarify the cumulative impact of diabetes and AD dementia on caregiver burden.Item The Relationship Between Family Caregivers’ Anticipatory Grief and Severity of Dementia(Oxford University Press, 2021-12-17) Gavin, Nicole; Shan, Mu; Johns, Shelly; Judge, Katherine; Fowler, Nicole; Medicine, School of MedicineAnticipatory grief is the process of experiencing normal bereavement before the physical death of a significant person. To date, anticipatory grief has been related to higher levels of caregiver depression, anxiety, subjective burden, and poorer problem solving. Additionally, higher levels anticipatory grief are observed in caregivers of those with Alzheimer’s Disease and Related Dementias (ADRD) compared to caregivers of those with mild cognitive impairment, implying a relationship between disease severity and caregiver anticipatory grief. Analyses were performed on data for ADRD caregivers (n=56) enrolled in the IU Telephone Acceptance and Commitment Therapy for Caregiver (TACTICs) trial; an RCT evaluating an ACT intervention for ADRD caregivers with anxiety. Inclusion criteria included identifying as the primary caregiver of an ADRD patient, and clinically significant anxiety (GAD7 score >10). The average age of caregivers was 61.9 years, 41.1% were spouses, 83.9% were white and 14.3% were black. Mean anticipatory grief scores were notably higher (84.6) compared to the previously reported means across the literature (74.9). Using multiple regression models, we determined a caregivers’ anticipatory grief, as measured by the anticipatory grief scale, is not significantly associated with the patients’ dementia severity, as measured by the Dementia Severity Rating Scale (DSRS) (p=0.66), Results revealed that higher levels of caregiver burden, as measured by the Zarit Burden Index, are significantly associated with more anticipatory grief (p< 0.01). Understanding these relationships contributes to a better understanding of ADRD caregivers, identifying “high-risk” caregivers, and informing future interventions and care.Item Sources of Burden in Caregivers of Persons with Early- and Late-Onset Alzheimer’s Disease(Oxford University Press, 2023) Crouch, Adele; Massimo, Lauren; School of NursingFunctional impairment and neuropsychiatric symptoms (NPS) are common in Alzheimer’s disease (AD) and contribute to caregiver burden. Persons with early-onset AD (EOAD) on average experience greater functional impairment and NPS compared to late-onset AD (LOAD), yet their contribution to caregiver burden have not been explored. Objectives were to: 1) compare functional impairment, NPS, and caregiving burden in EOAD and LOAD; 2) identify sources of caregiver burden including functional impairment and NPS in EOAD and LOAD. Caregivers of 85 persons with EOAD (n=63) and LOAD (n=22) completed questionnaires [Functional Activities Questionnaire, Neuropsychiatric Inventory, Zarit Burden Inventory]. T-tests compared group differences in function, NPS, and caregiver burden. Persons with EOAD had greater NPS frequency than LOAD (t= 2.275, p=0.026). There were no significant differences between groups in function or caregiver burden. Multivariate regression analyses were performed in AD groups, with function and NPS frequency as predictors of caregiver burden covarying for age, caregiver sex, and global cognitive function (MMSE). In the total AD sample, the model explained 12.6% of the variance in caregiver burden [F(5,52)=2.64, adjusted R2=0.126; p=0.033] and poor function was a significant predictor (standardized B=0.42, p=0.003) of caregiver burden. In EOAD, the model explained 17% of the variance in caregiver burden [F(5,35)=2.64, adjusted R2=0.17; p=0.04], and poor function was a significant (standardized B=0.42, p=0.015) predictor of caregiver burden; however this was not the case in LOAD. Results suggest poor function predicts caregiver burden in EOAD. Although NPS in EOAD are more frequent, this was not a predictor of caregiver burden.Item SYMPTOM CORRELATES OF CAREGIVER BURDEN IN SPOUSES OF PERSONS WITH DEMENTIA(Office of the Vice Chancellor for Research, 2012-04-13) Malan, Jamee S.; McLennon, Susan M.Caregiver burden is a key predictor of institutionalization of persons with dementia. Using the Lenz et al. (1997), Theory of Unpleasant Symptoms as a guide, the purpose of this study was to determine whether pain, fatigue, or depressive symptoms are associated with caregiver burden among spouses of persons with dementia. A secondary analysis of an existing database of a cross-sectional, descriptive study of 83 spouses of persons with dementia was conducted. Spouses were predominately female (60%) and Caucasian (76%) with a mean age of 77 years. Symptom data were collected using items from the SF-36v2. Burden data was collected using the abridged Zarit Burden Interview. Data were analyzed using descriptive, correlational, and multiple regression statistical analyses. Spouse caregiver pain, fatigue, and depressive symptoms were significantly associated with caregiver burdenItem The Relationship Between Socioeconomic Disadvantage And Dementia Caregiver Burden(Oxford University Press, 2022) Beverly, Alexis; Baucco, Christina; Park, Seho; Schroeder, Matthew; Johns, Shelley; Judge, Katherine; Fowler, Nicole; Biostatistics and Health Data Science, Richard M. Fairbanks School of Public HealthMore than 16 million people provide unpaid care to someone with Alzheimer’s disease or a related dementia (ADRD) in the United States. These caregivers frequently report experiencing psychological and physical burden. Prior research shows that socioeconomic disadvantaged neighborhoods have higher rates of ADRD, but little is known about caregiver burden. We hypothesized more socioeconomic disadvantage is associated with higher caregiver burden. We performed a secondary analysis using baseline data on dementia caregivers (n=132) enrolled in the Indiana University Telephone Acceptance and Commitment Therapy for Caregivers (TACTICs) pilot trials. Mean (SD) caregiver age was 61.6 (11.6) years; 83.3% women; 78.8% white; 19.7% black. Seventy-two percent of the caregivers lived with the care recipient and 50.8% reported moderate dementia severity. A linear regression model examined the relationship between caregiver’s national Area Deprivation Index (ADI) score (ranging from 1–100 with higher scores indicating greater socioeconomic disadvantage) and caregiver burden. The following covariates were included: age, sex, race, education, shared residence with care-recipient, health status, anxiety, depression, and dementia severity of care recipient. Higher ADI was associated with lower caregiver burden (β=-0.222, p < 0.001). Caregiver burden has a significant negative relationship with ADI and dementia severity (p<-.001 and 0.046, respectively) and positive relationship with anxiety (p=0.014) controlling other covariates in the model. Although we found no support for the hypothesis, further research should examine these factors with how caregiver’s ADI may impact other psychosocial wellbeing outcomes. Discussion will highlight the need for caregivers to have access to resources that can aid them through their experience.