Browsing by Subject "Caregivers"
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Item Adapting Behavioral Interventions to Better Support Alzheimer's Disease and Lewy Body Dementia Care Partners Based on Their Unique Needs and Differences(2021-12-16) Kew, Chung Lin; Krumwiede, Kimberly Hoggatt; Juengst, Shannon B.; Osborne, Candice L.; Tzen, Yi-Ting; Kelley, Brendan; Smith, Scott AlanCare partners of individuals with Alzheimer's disease (AD) and Lewy body dementia (LBD) are typically family members or friends. They often experience physical and psychological strain associated with caregiving. Hence, the long-term goal is to improve the physical and psychological health and well-being of care partners of individuals with AD and LBD through the provision of a self-management intervention, problem-solving training (PST). To achieve this goal, the following gap in literature has to be addressed. Firstly, although AD and LBD have different symptom presentations, little is known about challenges specific to LBD care partners and how these challenges differ between AD and LBD care partners. Next, research to date has yet to identify specific care partner characteristics that could impact uptake and outcomes of behavioral interventions that promote self-management, like PST. Therefore, this (ORBIT model Phase I) study aims to (1) identify differences between the challenges faced by care partners of AD and LBD patients to support the transferability of care partner interventions to all care partners, and (2) identify whether PST needs to be adapted (i.e., optimized) to account for unique individual differences that may affect how much a person benefits from the intervention. Results of both these aims will provide a concrete understanding of both AD and LBD care partner experiences and specific care partner characteristics and intervention components that could impact how we can better support care partners.Item Association Between Posttraumatic Growth, Medication Adherence, and Barriers to Adherence in Pediatric Solid Organ Transplant Patients and Their Caregivers(2020-08-01T05:00:00.000Z) Mbroh, Hayden Mensah; Triplett, Kelli; Stewart, Sunita M.; McClintock, Shawn Michael; Bonsu, Mary L.; Selders, MichaelLiving with a chronic illness can be a traumatic experience, yet there is also evidence that adverse experiences may facilitate positive psychological changes, such as posttraumatic growth (PTG). Little is known about PTG in pediatric solid organ transplant (SOT) patients and their caregivers or PTG's relationship with health behaviors. Study aims were to longitudinally evaluate 1) the role of medication nonadherence and BTA on PTG, and 2) PTG's influence on medication nonadherence and barriers to adherence (BTA). It was hypothesized that 1) Greater baseline medication nonadherence and BTA would predict greater follow-up PTG, and 2) greater baseline PTG would predict lower follow-up medication nonadherence and fewer BTA. Participants included 43 pediatric SOT patient-caregiver dyads at baseline (range: .11-17.09 years post SOT) and follow-up (range: .87-3.37 years post baseline). Baseline measures of PTG, medication nonadherence, BTA, and psychosocial factors were obtained. Follow-up measures of primary outcomes were also collected. Baseline medication nonadherence (β = -.05, SE = .87), patient-rated BTA (β = -.17, SE = .10), and caregiver-rated BTA (β = -.24, SE = .12), did not predict follow-up patient PTG. More baseline caregiver-rated BTA (β = .29, SE = .30), but not medication nonadherence (β = .07, SE = 3.02) or patient-rated BTA (β = .20, SE = .20), predicted greater follow-up caregiver PTG. Baseline patient PTG (β = -.01, SE = .04) and caregiver PTG (β = -.25, SE = .01) did not predict follow-up medication nonadherence. Higher baseline caregiver PTG (β = -.25, SE = .08), but not patient PTG (β = -.07, SE = .26), predicted fewer follow-up patient-rated BTA. Greater baseline patient PTG (β = -.01, SE = .21), but not caregiver PTG (β = -.04, SE = .06), predicted more follow-up caregiver-rated BTA. Exploratory analyses were also conducted to identify psychosocial predictors of primary outcomes. Results suggest that strengthening PTG in caregivers of pediatric SOT patients may be important for reducing BTA. Further research needed to determine whether specific domains of PTG and BTA are associated. Findings have the potential to inform strength-based interventions focused on decreasing BTA for pediatric SOT patients.Item Culturally Informed Motivational Interviewing to Improve Oral Chemotherapy Adherence for Pediatric Acute Lymphoblastic Leukemia Patients and Their Caregivers: A Feasibility, Acceptability, and Preliminary Efficacy Trial(2019-07-24) El Behadli Gonzalez, Ana Fey; Faith, Melissa A.; Stewart, Sunita M.; Winick, Naomi; Germann, Julie; Acosta, DailynBACKGROUND: Curative therapy for childhood acute lymphoblastic leukemia (ALL) mandates a two-to-three-year maintenance chemotherapy phase wherein patients must take daily oral 6-mercaptopurine (6-MP). 6-MP regimen adherence is challenging and failure to take medication has been associated with an increase in relapse risk. Accordingly, interventions that enhance 6-MP adherence during ALL maintenance chemotherapy may result in decreased morbidity and mortality for pediatric ALL patients. This study investigated the feasibility and acceptability of brief, English- and Spanish-delivered, culturally informed MI sessions during routine outpatient ALL maintenance therapy appointments. Additionally, this study preliminarily explored MI efficacy, compared to an education-only control, for improving caregiver-reported 6-MP adherence, patients' TGN blood serum levels, and caregiver-perceived 6-MP adherence barriers. METHOD: Participants included 121 caregivers (Age M(SD) = 36.66(8.02), 80.7% mothers, 47.1% Hispanic, 23.1% Spanish-speaking) of pediatric ALL patients (Age M(SD) = 7.55(4.80), range = .9-24; 66.1% male; Medicaid = 54.2%; B- and T-ALL risk category: Standard = 50.9%, High/Very High = 49.1%) in maintenance ALL treatment. Eighty caregivers (66.12%) were randomized to receive MI and the remaining 42 caregivers (33.8%) were randomized to the education-only control group. For the purpose of analyses, participants were categorized based on their ethnicity and primary language as a proxy for potential cultural similarities. Cultural categories included: (1) Non-Hispanic, English-speaking caregivers (N=63, 52.07%); (2) Hispanic, English-speaking caregivers (N=30, 24.79%); and (3) Hispanic, Spanish-speaking caregivers (N=28, 23.14%). Participants completed self-report measures assessing demographics, 6-MP adherence, 6-MP knowledge, perceived medication adherence barriers, and intervention acceptability. We obtained biological data (i.e., TGN concentrations) via chart review. MI sessions were audio recorded and rated using the MITI 4.2.1. coding manual to ensure intervention fidelity. Primary analyses included Analysis of Covariance (ANCOVA). We also conducted exploratory post-hoc analyses. RESULTS: Findings confirmed primary MI feasibility and acceptability hypotheses, supporting the possibility of delivering adherence-enhancing MI as part of routine oncological care. Additionally, although methodological limitations hindered adequate assessment of MI efficacy for improving caregiver-reported 6-MP adherence and patients' TGN concentration, post-hoc analyses suggested MI was effective for reducing caregiver-perceived 6-MP adherence barriers. CONCLUSIONS: MI may represent a deliverable, cost-effective, "no-risk" approach to improving adherence and represent an easily incorporated, low cost avenue for enhancing cure. Overall, study findings have the potential to inform a larger, future MI efficacy RCT by establishing the feasibility and acceptability of MI delivery during outpatient oncology clinic visits.Item The Effects of Acculturation on the Mexican-American Dementia Caregiver Experience(2005-12-19) Dominguez, Gabriel Angel; Silver, Cheryl H.There is a paucity of research to understand the experience of the Mexican-American caregiver of family members with dementia. The proposed study will investigate how acculturation affects the caregiver experience in the Mexican-American culture. Correlations between caregiver burden, problem behaviors, and positive aspects of caregiving will be computed and compared between participants at two acculturation levels. More caregiver burden and more positive aspects of caregiving are hypothesized to exist in the group with low acculturation, although the correlations between these two variables are expected to be similar in the acculturation groups. These results would imply that acculturation affects Mexican-American caregivers in both positive and negative ways.Item Factors Associated with Posttraumatic Growth in Trauma Patients and ICU Family Members(2017-07-10) Roden-Foreman, Kenleigh; Robinson, Richard C.; Warren, Ann Marie; Roaten, Kimberly Dayle; Bennett, Monica; Petrey, LauraEach year in the United States, over three million people are hospitalized for traumatic injuries and five million are admitted to intensive care units (ICUs) as a result of traumatic injury or critical illness. Although the traditional benchmark for successful care in these settings has been patient survival, there has been an increased awareness of psychosocial issues that continue to impact patients' and family members' quality of life beyond the hospital stay. The experience of a traumatic injury or serious illness, for patients or their families, can be challenging to recover from both physically and psychologically. Extensive literature shows that presence of a psychological disorder can lead to or exacerbate negative physical health outcomes in patients, including increased risk of re-hospitalization, greater healthcare costs, and poorer quality of life. From the perspective of family members, psychological strain may hinder carrying out necessary caregiving activities for the patient, and this strain may continue unchecked since the majority of support and resources are directed at patients, not their caregivers. The primary emphasis of psychology, medicine, and related disciplines tends to be on ways in which traumatic events are precursors to distress and, potentially, severe psychological and physical dysfunction. Although this focus is understandable given the prevalence of research and clinical training on the topic, substantially less literature describes the influence of positive psychological outcomes. Posttraumatic growth (PTG) describes positive change resulting from a struggle with highly challenging events, such as sustaining a traumatic injury or witnessing a family member in the ICU. To date, no studies have examined factors associated with PTG in a heterogeneous sample of trauma patients or in the families of trauma/critical care ICU patients. The present studies sought to fill these gaps in the literature. The first study determined factors associated with PTG in a mixed trauma patient population one year post-injury. The second study did the same, but examined PTG in family members of trauma/critical care ICU patients one year post-hospitalization. By identifying variables related to growth, clinical interventions may be targeted to bolster those areas in hopes of improving outcomes in patients and their family members.Item Families in the ICU(2020-10-16) DeLisle, SylvainItem The hidden patient: addressing the caregiver(2008-06-06) Roche, VivyenneItem Improving Nutritional Knowledge of Caregivers in Hyderabad, India: A Pilot Study(2019-04-02) Tinger, Sophia Tibe; Patterson, Abigail M.; Reed, W. Gary; Phelps, EleanorBACKGROUND: India has the highest prevalence of underweight children under 5 in the world. While lack of access to food is one contributing factor to undernutrition, a caregiver's nutritional knowledge is a more important determinant. Caregivers can improve their nutritional knowledge through nutritional counselling, which is already one of the standard management options for treating children with mild to moderate malnutrition. Therefore, improving nutritional counselling for caregivers can be an effective way to combat undernutrition. OBJECTIVE: The aim of this study was to increase caregiver nutritional knowledge gained after receiving diet counseling at Niloufer Hospital, in Hyderabad, India, by 25% by March 2017 through the use of quality improvement tools. METHODS: Checklists and flipcharts were designed using PDSA cycles and DMAIC, two frequently used quality improvement tools. These interventions were then sequentially implemented in two-week increments over a period of six weeks. Caregivers of children 5 and under were given short surveys both before and after counselling. Change in knowledge scores were calculated from the difference in the pre- and post-counselling survey scores. This was done for three different age groups over each phase of the project: Baseline Phase, Checklist Phase, and Flipchart Phase. This data was then analyzed using a one-way ANOVA, as well as a post-hoc analysis with a student-Newman-Keuls test to confirm the ANOVA. RESULTS: The aim was achieved for all age groups when comparing the change in knowledge scores from the final phase (Flipchart Phase) to the Baseline Phase. For the Under 6 Months age group, the change in knowledge scores were 5.24, 10.17, and 12.20 for the Baseline, Checklist, and Flipchart phases respectively. The percent increase from the Baseline Phase to the Flipchart phase was 132.8%. For the 6 to 35 Months group, the change in knowledge score was 9.25 in the Baseline Phase, 8.14 in the Checklist Phase, and 18.86 in the Flipchart Phase, a 103.9 percent increase from the Baseline Phase. Finally, there was a change of knowledge score of 3.57 in the Baseline Phase, 6.25 in the Checklist Phase, and 29.17 in the Flipchart Phase for the 3-5 Years age group. This age group showed a 717.1 percent increase between the Baseline Phase and the final phase of the study. There were no statistically significant findings in this pilot study. However, there was a positive trend showing the flipcharts were the most effective intervention. CONCLUSION: This pilot study demonstrated that these simple-to-create and low-cost interventions, especially the flipcharts, can improve knowledge gained through counselling in low resource settings. Future studies are needed to determine if these interventions can be improved and expanded for wider use.Item The Influence of Demographic Factors, Resilience, and Other Psychological Factors in Predicting Caregiver Burden in Trauma ICU Populations(2020-12-01T06:00:00.000Z) Patel, Sarita; Warren, Ann Marie; Bennett, Monica; Robinson, Richard C.; Howe-Martin, Laura; Foreman, Michael; Petrey, LauraAlthough only a small number of studies specifically focus on caregivers of ICU patients, findings suggest that these caregivers can experience a substantial burden. Although negative psychological states, including depression and posttraumatic stress disorder (PTSD), are gaining attention in the literature following the injury of a family member, less attention has been paid to the role that potentially protective psychological factors, such as resilience, may have in one's response to injury or critical illness in a family member. The purpose of this study is to examine the role of specific demographics factors and resilience in predicting caregiver burden, depression, and PTSD symptoms in caregivers of trauma patients. Eligible individuals were identified based on their family member's medical diagnosis through the trauma service admission list at Baylor University Medical Center (BUMC), a Level I trauma center and part of the Baylor Scott & White Healthcare system. Participants (aged 18-82, N=91, 73.6% female) completed brief self-report measures assessing depression, PTSD and resilience at baseline, and completed brief self-report measures assessing depression, PTSD, and caregiver burden at three-month follow-up. Regression analyses were used to determine the association between resilience and each outcome (caregiver burden, depression, and PTSD). Results illustrated significant associations between resilience and depression and PTSD separately. Exploratory analyses were conducted to determine the role of demographic factors in predicting caregiver burden, depression, and PTSD over time. A series of linear and logistic regressions were conducted to evaluate the intersectionality of the demographic factors and each outcome. Findings suggest that higher levels of resilience may significantly be associated with lower rates of depression and PTSD. Additionally, the interaction of several demographic factors may significantly be associated with higher rates of depression and PTSD. Current study findings suggest that certain demographic factors are associated with higher levels of depression and PTSD in caregivers. Although further exploration is warranted before drawing firm conclusions, this novel information may be used to direct future research, educate caregivers, clinicians and researchers, and inform the development of interventions specific to this population.Item [Southwestern News](1995-04-27) Harrell, AnnItem [UT Southwestern Medical Center News](2009-11-30) Shear, Kristen HollandItem [UT Southwestern Medical Center News](2011-02-28) Shear, Kristen Holland