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Item Black Grandmother Power: The Art and Wisdom of Caregiving and Leadership(2024-02) Rowley, Latosha Morvette; Jackson, Tambra; Graff, Cristina Santamaria; Murtadha, Khaula; Morton, CrystalBlack grandmothers often take on the dual role of caregivers and leaders within their families. The caregiving and leadership practices demonstrated by grandmothers enables Black children to resist social inequities and oppression that they encounter in their lives. The narratives of Black grandmothers and their caregiving and leadership roles remain underexplored/absent from the existing research on the Black family. This research proposes to fill the gap in literature by analyzing multiple case studies in which Black grandmothers testify to their lived experiences with deploying caregiving love to ensure the social, emotional, physical, educational, and spiritual well-being of their grandchildren. These case studies have been analyzed through the theoretical lens of Africana Womanism and Black Womanist Leadership. By understanding the leadership experiences and efforts of Black grandmothers, as well as the barriers they have encountered because of their intersectional positionalities they occupy, there are applicable insights into culturally responsive school leadership, instruction, curriculum, policies, and practices. Uncovering these insights can improve academic growth and development for Black children.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 Do health behaviors mediate the relationships between loneliness and health outcomes in caregivers of cancer patients?(2013-11-06) Adams, Rebecca Nichole; Mosher, Catherine E.; Rand, Kevin L.; Hirsh, Adam; Grahame, Nicholas J.Greater levels of loneliness have shown consistent associations with poorer mental and physical health; however, the reason for these relationships is unknown. Engagement in poorer health behaviors among individuals with higher levels of loneliness is one potential explanation for this relationship. Self-regulation theory suggests that coping with feelings of loneliness may impair attempts to control health behaviors. Caregivers of cancer patients have been found to have poor health behaviors (e.g., inadequate exercise) and high levels of loneliness. Thus, the aim of the study is to examine whether health behaviors mediate the relationships between loneliness and mental and physical health outcomes among caregivers of cancer patients. Methods: A secondary data analysis was conducted using data from a longitudinal study of cancer patients and their family caregivers who were staying at the American Cancer Society’s Hope Lodge. Participants completed self-report questionnaires measuring levels of loneliness, engagement in health behaviors (i.e., exercise and fruit and vegetable consumption), mental and physical health, and demographic and medical characteristics at three time points over a 4-month period. A bootstrapping macro was used to examine the indirect effect of loneliness on mental and physical health via health behaviors. Results: Contrary to hypotheses, exercise and fruit and vegetable consumption did not mediate the relationships between loneliness and physical and mental health among cancer patients’ caregivers. Additional research is needed to determine whether health behaviors partially account for the relationships between loneliness and health outcomes or whether alternate explanations for these relationships should be considered.Item How Older Adult Caregivers Manage Wound Care Procedures, Resources Needed, and Public Policy Implications(2022-10) Swartzell, Kristen Leigh; Fulton, Janet S.; von Gaudecker, Jane R.; Bartlett Ellis, Rebecca J.; Huber, LesaAs healthcare increasingly shifts to home and community-based settings, informal caregiver responsibilities are increasing beyond assistance with activities of daily living to include complex care procedures previously performed by licensed caregivers in clinical settings. With an aging population, increasing numbers of older adults are assuming a caregiving role, a trend that is projected to continue into the foreseeable future. These older caregivers performing complex care procedures such as wound care. The purpose of this dissertation study was to understand how older adult caregivers manage complex wound care procedures. Aims were to 1) develop a theory for how caregivers manage; 2) identify themes related to resources needed, and 3) determine resources available through the existing Medicaid 1915(c) waivers program. Aims 1 and 2 were achieved using qualitative analysis of interviews with 18 older adult caregivers aged 65 and older who were performing wound care in the home for a care recipient. Grounded theory methods were used to develop a theoretical framework describing the process of how the participants managed caregiving. The resultant theory, Pushing Through, consisted of five phases: 1) accepting the role, 2) lacking confidence, 3) creating a system, 4) trusting in self, 5) owning the outcomes. Secondary analysis of the interview data used thematic analysis methods to identify resources used or needed for the caregiver role. The resultant themes were (a) connection to a healthcare professional, (b) written instructions, (c) access to wound care supplies, (d) access to durable medical equipment, (e) financial resources, (f) personal care coverage, and (g) socialization and emotional support. Aim 3 used descriptive analysis of Medicaid 1915(c) home- and community-based services waivers for adults aged 65 and older for all 50 states plus the District of Columbia to identify the frequency and type of waiver services available for supporting caregivers. Results revealed that the number of services offered by state Medicaid waiver programs varied greatly across the country. Respite in varying forms was the most frequently available service. Findings from this dissertation will contribute to the development of evidence-based strategies to sustain older adult caregivers within their caregiving role.Item Perceived care partner burden at 1-year post-injury and associations with emotional awareness, functioning, and empathy after TBI: A TBI model systems study(IOS Press, 2023) Klyce, Daniel W.; Merced, Kritzianel; Erickson, Alexander; Neumann, Dawn M.; Hammond, Flora M.; Sander, Angelle M.; Bogner, Jennifer A.; Bushnik, Tamara; Chung, Joyce S.; Finn, Jacob A.; Physical Medicine and Rehabilitation, School of MedicineBackground: People with traumatic brain injury (TBI) can lack awareness of their own emotions and often have problems with emotion dysregulation, affective disorders, and empathy deficits. These impairments are known to impact psychosocial behaviors and may contribute to the burden experienced by care partners of individuals with TBI. Objective: To examine the associations of emotional awareness, emotional functioning, and empathy among participants with TBI with care partner burden. Method: This multisite, cross-sectional, observational study used data from 90 dyads (participants with TBI and their care partner) 1-year post-injury. Participants with TBI completed the Difficulty with Emotional Regulation Scale (DERS; Awareness, Clarity, Goals, Impulse, Nonacceptance, and Strategies subscales); PTSD Checklist-Civilian Version; NIH Toolbox Anger-Affect, Hostility and Aggression Subdomains; PHQ-9; GAD-7; and the Interpersonal Reactivity Index (empathic concern and perspective taking subscales). Care partners completed the Zarit Burden Inventory (ZBI) and provided demographic information. Results: Care partners were predominately female (77%), and most were either a spouse/partner (55.2%) or parent (34.4%). In an unadjusted model that included assessments of emotional awareness, emotional functioning, and empathy of the participant with TBI, the DERS-Awareness and NIH-Hostility subscales accounted for a significant amount of variance associated with care partner burden. These findings persisted after adjusting for care partner age, relationship, education, and the functional status of the participant with TBI (β= 0.493 and β= 0.328, respectively). Conclusion: These findings suggest that high levels of hostility and low emotional self-awareness can significantly affect the burden felt by TBI care partners.Item Psychosocial Experiences, Challenges, and Recommendations for Care Delivery among Partners of Breast Cancer Survivors: A Qualitative Study(MDPI, 2023-02-04) Acquati, Chiara; Head, Katharine J.; Rand, Kevin L.; Alwine, Jennifer S.; Short, Danielle Nicole; Cohee, Andrea A.; Champion, Victoria L.; Burke Draucker, Claire; Communication Studies, School of Liberal ArtsFor women diagnosed with breast cancer, partners are consistently identified as the primary support person. Despite growing consensus about the psychosocial experience and unmet needs of cancer caregivers, limited evidence exists about strategies to offer partner-centered care across the cancer continuum. This study describes challenges endured by partners of breast cancer survivors (BCS), strategies implemented to manage these experiences, and recommendations for healthcare providers to inform targeted psychosocial care. Using convenience sampling, 22 partners of female BCS were recruited and completed semi-structured interviews. Conventional content analysis was used to code and synthesize findings. Participants described undergoing five experiences in their role as romantic partners: (a) assuming the role of caregiver, (b) becoming healthcare advocates for BCS, (c) connecting emotionally with the partner, (d) managing their own painful emotions, and (e) connecting with others for support. Experience-specific coping strategies and recommendations were identified. Romantic partners face multiple transitions across the cancer care continuum, which warrant investigation to sustain their well-being and active participation in illness management. Psychosocial interventions for this group will benefit from flexible implementation and attention to care delivery, mental health, and supportive/social needs.Item Stress, Self-Efficacy, Worries, and Challenges for Caregivers of Children with Type 1 Diabetes During the COVID-19 Pandemic(Indiana Medical Student Program for Research and Scholarship (IMPRS), 2020-12-15) Hand, Breanne; Soni, Priya; Oyetoro, Rebecca; Albanese-O’Neill, Anastasia; Ismail, Heba; DiMeglio, Linda; Department of Pediatrics, IU School of MedicineBackground: Approximately 200,000 American youth live with Type 1 Diabetes (T1D). Intensive daily management is critical to optimize disease outcomes. Little is known about COVID-19 pandemic effects on persons with T1D and their caregivers. We hypothesized caregivers would report increased stress, lower self-efficacy (SE), and more difficult diabetes management associated with the pandemic. Methods: A 49-item survey using Likert scales and open-ended response questions was distributed via email and T1D-related social media platforms from May 4-June 2,2020 to caregivers of children with T1D <18 years of age. The Patient-Reported Outcomes Measurement Information System (PROMIS) SE short form was used to measure general SE. Results: 260 caregivers completed surveys: 94.2% female, mean age 42.4±7.7 years, 80.3% college degree or higher, 53.8% annual income >$99,000, 77.3% privately insured. Mean child age 11.0±4.1 years, mean T1D duration 4.2±3.4 years. 24.2% reported having COVID-19 or knowing someone diagnosed with COVID-19. 71.9% reported greater stress than before the pandemic. 9.6% reported job loss, 25.8% financial difficulty related to COVID-19. General SE levels were high, significantly correlated with overall COVID-19-related SE (r=0.394, p<0.001), and T1D care-SE during COVID-19 (r=0.421, p<0.001). 210 respondents provided open-ended response qualitative information on worries: 87.6% reported a worry, remainder not worried. Common worries were COVID-19-related diabetes complications including uncontrolled blood sugars, diabetic ketoacidosis, and worry about child’s increased risk for severe disease, including death. 209 reported about challenges; 90.9% stated they had at least one challenge. Family isolation and mental health were the most-stated challenges. Conclusion: Despite reporting high overall SE, caregivers of T1D children during the pandemic reported greater overall stress, worries, and challenges. Given that data do not suggest that children with T1D are at increased risk of COVID-19 complications, healthcare providers should work to address this knowledge gap while providing families with social and mental health supports.