Browsing by Subject "Caregivers"
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Item 237. A Case-Control Study Investigating Household, Community, and Clinical Risk Factors Associated with Multisystem Inflammatory Syndrome in Children (MIS-C) after SARS-CoV-2 Infection(Oxford University Press, 2022) Zambrano, Laura D.; Wu, Michael J.; Martin, Lora M.; Malloch, Lacy; Newhams, Margaret M.; Son, Mary Beth; Sanders, Cameron; Patterson, Kayla; Halasa, Natasha B.; Fitzgerald, Julie C.; Leroue, Matthew; Hall, Mark; Irby, Katherine; Rowan, Courtney M.; Wellnitz, Kari; Loftis, Laura L.; Bradford, Tamara T.; Staat, Mary A.; Babbit, Christopher; Carroll, Christopher L.; Pannaraj, Pia S.; Kong, Michele; Chou, Janet; Patel, Manish M.; Randolph, Adrienne G.; Campbell, Angela P.; Hobbs, Charlotte V.; Medicine, School of MedicineBackground: Risk factors for MIS-C, a rare but serious hyperinflammatory syndrome associated with SARS-CoV-2 infection, remain unclear. We evaluated household, clinical, and environmental risk factors potentially associated with MIS-C. Methods: This investigation included MIS-C cases hospitalized in 14 US pediatric hospitals in 2021. Outpatient controls were frequency-matched to case-patients by age group and site and had a positive SARS-CoV-2 viral test within 3 months of the admission of their matched MIS-C case (Figure 1). We conducted telephone surveys with caregivers and evaluated potential risk factors using mixed effects multivariable logistic regression, including site as a random effect. We queried regarding exposures within the month before hospitalization for MIS-C cases or the month after a positive COVID-19 test for controls. Enrollment scheme for MIS-C case-patients and SARS-CoV-2-positive outpatient controls. MIS-C case-patients were identified through hospital electronic medical records, while two outpatient controls per case were identified through registries of outpatient SARS-CoV-2 testing logs at facilities affiliated with that medical center. Caregivers of outpatient controls were interviewed at least four weeks after their positive test to ensure they did not develop MIS-C after their infection. Results: We compared 275 MIS-C case-patients with 494 outpatient SARS-CoV-2-positive controls. Race, ethnicity and social vulnerability indices were similar. MIS-C was more likely among persons who resided in households with >1 resident per room (aOR=1.6, 95% CI: 1.1–2.2), attended a large (≥10 people) event with little to no mask-wearing (aOR=2.2, 95% CI: 1.4–3.5), used public transportation (aOR=1.6, 95% CI: 1.2–2.1), attended school >2 days per week with little to no mask wearing (aOR=2.1, 95% CI: 1.0–4.4), or had a household member test positive for COVID-19 (aOR=2.1, 95% CI: 1.3–3.3). MIS-C was less likely among children with comorbidities (aOR=0.5, 95% CI: 0.3–0.9) and in those who had >1 positive SARS-CoV-2 test at least 1 month apart (aOR=0.4, 95% CI: 0.2–0.6). MIS-C was not associated with a medical history of recurrent infections or family history of underlying rheumatologic disease. Conclusion: Household crowding, limited masking at large indoor events or schools and use of public transportation were associated with increased likelihood of developing MIS-C after SARS-CoV-2 infection. In contrast, decreased likelihood of MIS-C was associated with having >1 SARS-CoV-2 positive test separated by at least a month. Our data suggest that additional studies are needed to determine if viral load, and/or recurrent infections in the month prior to MIS-C contribute to MIS-C risk. Medical and family history were not associated with MIS-C in our analysis.Item An mHealth App to Support Caregivers in the Medical Management of Their Child With Cancer: Beta Stage Usability Study(JMIR, 2024-10-17) Mueller, Emily L.; Cochrane, Anneli R.; Campbell, Madison E.; Nikkhah, Sarah; Holden, Richard J.; Miller, Andrew D.; Pediatrics, School of MedicineBackground: Previous research demonstrated that caregivers of children with cancer desired a mobile health (mHealth) tool to aid them in the medical management of their child. Prototyping and alpha testing of the Cope 360 app (Commissioning Agents, Inc) resulted in improvements in the ability to track symptoms, manage medications, and prepare for urgent medical needs. Objective: This study aims to engage caregivers of children with cancer in beta testing of a smartphone app for the medical management of children with cancer, assess acceptance, identify caregivers' perceptions and areas for improvement, and validate the app's design concepts and use cases. Methods: In this pilot, study caregivers of children with cancer used the Cope 360 mHealth app for 1 week, with the goal of daily logging. Demographics and a technology acceptance survey were obtained from each participant. Recorded semistructured interviews were transcribed and analyzed iteratively using NVivo (version 12, QSR International) and analyzed for information on usage, perceptions, and suggestions for improvement. Results: A total of 10 caregivers participated in beta testing, primarily women (n=8, 80%), married, with some college education, and non-Hispanic White (n=10, 100%). The majority of participants (n=7, 70%) had children with acute lymphocytic leukemia who were being treated with chemotherapy only (n=8, 80%). Overall, participants had a favorable opinion of Cope 360. Almost all participants (n=9, 90%) believed that using the app would improve their ability to manage their child's medical needs at home. All participants reported that Cope 360 was easy to use, and most would use the app if given the opportunity (n=8, 80%). These values indicate that the app had a high perceived ease of use with well-perceived usefulness and behavioral intention to use. Key topics for improvement were identified including items that were within the scope of change and others that were added to a future wish list. Changes that were made based on caregiver feedback included tracking or editing all oral and subcutaneous medications and the ability to change the time of a symptom tracked or medication administered if unable to do so immediately. Wish list items included adding a notes section, monitoring skin changes, weight and nutrition tracking, and mental health tracking. Conclusions: The Cope 360 app was well received by caregivers of children with cancer. Our validation testing suggests that the Cope 360 app is ready for testing in a randomized controlled trial to assess outcome improvements.Item Apathy and Anxiety are Related to Poor Function in Persons with Early-Onset Alzheimer’s Disease(Oxford University Press, 2022) Crouch, Adele; Massimo, Lauren; School of NursingNeuropsychiatric symptoms are prevalent in persons with early-onset Alzheimer’s disease (EOAD) and may contribute to the inability to perform instrumental activities of daily living. We examined associations between frequently observed symptoms in persons with EOAD: apathy, anxiety, depression, and patient function. Caregivers of 94 persons with EOAD completed questionnaires including the Neuropsychiatric Inventory and the Functional Activities Questionnaire. Regression analyses were performed for each neuropsychiatric symptom as a predictor with covariates (age, sex disease duration) and our outcome was patient function. We then performed multivariate analysis with the significant predictors. We observed that apathy explained 20.51% [F(4,68)=5.65, adjusted R2=0.2051; p<0.001], anxiety explained 6.63% [F(4,70)=2.31, adjusted R2=0.0663 p<0.05], and depression was not a significant predictor of patient function. In a multivariate model, apathy and anxiety explained 21.03% [F(5,67)=4.83, adjusted R2=0.2103; p<0.001] of the variance in patient function. These results suggest apathy and anxiety contribute to diminished ability to complete functional activities.Item Barriers and facilitators to treatment participation by adolescents in a community mental health clinic(2013-05-17) Oruche, Ukamaka M.; Downs, Sarah M.; Holloway, Evan D.; Burke Draucker, Claire; Aalsma, Matthew C.An estimated 40–60% of children in mental health treatment drop out before completing their treatment plans, resulting in increased risk for ongoing clinical symptoms and functional impairment, lower satisfaction with treatment, and other poor outcomes. Research has focused predominately on child, caregiver, and family factors that affect treatment participation in this population and relatively less on organizational factors. Findings are limited by focus on children between 3 and 14 years of age and included only caregivers’ and/or therapists’ perspectives. The purpose of this descriptive qualitative study was to identify organizational factors that influenced participation in treatment, with special attention to factors that contributed to dropout in adolescents. The sample included 12 adolescent–caregiver dyads drawn from two groups in a large public mental health provider database. Analysis of focus group interview data revealed several perceived facilitators and barriers to adolescent participation in treatment and provided several practical suggestions for improving treatment participation. Implications of the findings for psychiatric mental health nurses and other clinicians who provide services to families of adolescents with mental health concerns are discussed.Item Barriers to Dental Care in Individuals with Special Healthcare Needs in Qatif, Saudi Arabia: A Caregiver’s Perspective(Dove Press, 2021-01-22) Alfaraj, Amal; Halawany, Hassan S.; Al-Hinai, Muntasar T.; Al-Badr, Abid H.; Alalshaikh, Marwa; Al-Khalifa, Khalifa S.; Prosthodontics, School of DentistryObjective: Access to dental care is a key factor influencing oral health outcomes. Individuals with special healthcare needs are at risk of not having access to dental care services which they need to maintain their oral health. This study assessed the magnitude of this problem and identified barriers responsible for the difficulties in accessing dental care in Qatif, Saudi Arabia, as reported by caregivers of individuals with special healthcare needs. Methods: This cross-sectional study collected data using a self-administered survey questionnaire from caregivers of individuals with special healthcare needs across 11 centers (eight special needs centers and three schools) in Qatif, Eastern Province of Saudi Arabia, between February and April 2019. Results: A total of 186 caregivers participated in the study, 102 (54.8%) of whom reported difficulties in getting access to dental care. The key barriers included lack of time on the part of caregivers (60.8%), unsuitable clinic environment (53.9%), difficulties with transportation (51.9%), medical/health status of the individual with special healthcare needs (51.0%), and geographically distant dental clinics (51.0%). Caregiver demographics (age, gender, and educational level) had no significant influence on the difficulties reported by caregivers in getting access to dental care for individuals with special healthcare needs (p>0.05). Conclusion: A large proportion of caregivers in Qatif, Saudi Arabia, experience difficulties with access to dental care services for individuals with special healthcare needs. The most common barriers are physical accessibility of dental facilities (for individuals with special healthcare needs), affordability, and lack of skills and knowledge of dental care providers.Item Beyond caregiving: Navigating life with a developmentally disabled daughter with a severe case of Hidradenitis Suppurativa(Wiley, 2024-06-04) Myers, Elisha M.; Nassim, Janelle S.; Dermatology, School of MedicineItem Caregiver and Juvenile Justice Personnel Perspectives on challenges and importance of caregiver engagement and the potential utility of a peer navigator program in the Juvenile Justice System(BMC, 2023-08-05) Dir, Allyson L.; Pederson, Casey; Khazvand, Shirin; Schwartz, Katie; Wiehe, Sarah E.; Aalsma, Matthew C.; Psychiatry, School of MedicineBackground: For youth involved in the juvenile justice (JJ) system, caregiver involvement and engagement in the system is crucial for youth development and outcomes of JJ cases; however, there are challenges to establishing positive/productive partnerships between caregivers and JJ representatives. The current project examines perspectives of caregivers and JJ personnel regarding facilitators and barriers to establishing JJ-caregiver partnerships, as well as their perceptions of the use of a caregiver navigator program to support caregivers of system-involved youth. Results are used to inform development of a caregiver navigator program to support caregivers and help them navigate the JJ system. Results: Semi-structured interviews were conducted with caregivers of youth involved in JJ (n = 15, 53% White, 93% female), JJ personnel (n = 7, 100% White, 50% female), and JJ family advisory board members (n = 5, 100% Black, 100% female). Caregivers reported varying experiences across intake/arrest, court, and probation processes. Positive experiences were characterized by effective communication and feeling supported by JJ. Negative experiences related to feeling blamed and punished for their child's system involvement and feeling unsupported. JJ interviews corroborated caregiver sentiments and also illustrated facilitators and barriers to JJ-caregiver partnerships. Both JJ personnel and caregivers endorsed potential benefits of a peer-based caregiver navigator program to provide social, informational, and emotional support. Conclusion: Continued work is needed to improve JJ-caregiver partnerships and use of a peer-based navigator program has the potential to address barriers to caregiver engagement in the JJ system.Item Caregiver-Based Interventions to Optimize Medication Safety in Vulnerable Elderly Adults: A Systematic Evidence-Based Review(Wiley, 2018-11) Wagle, Kamal C.; Skopelja, Elaine N.; Campbell, Noll L.; Medicine, School of MedicineOBJECTIVES: To study the effect of caregiver-focused interventions to support medication safety in older adults with chronic disease. DESIGN: Systematic review. SETTING: Studies published before January 31, 2017, searched using Ovid Medline, PubMed, EMBASE, Scopus, CINAHL, PsycINFO, and Google Scholar. PARTICIPANTS: Caregivers with or without a care recipient. MEASUREMENTS: Inclusion criteria: interventions focused on caregivers aiming to improve medication safety. Studies not focusing on older adults, not evaluating medication safety, failing to include caregivers, or without a comparison group were excluded. RESULTS: The initial search revealed 1,311 titles. Eight studies met inclusion criteria. The strategies used in randomized trials were a home-based medication review and adherence assessment by a clinical pharmacist (2 home visits 6-8 weeks apart, with pharmacist and physician meeting independently) that found no difference in nonelective hospital admissions (p=.8) but fewer medications (p=.03); a 19-minute educational DVD and an hour-long medication education and training that improved caregiver satisfaction (p<.04); a medication education and adherence intervention (2-3 home visits per care recipient and caregiver dyad over 8 weeks) that found no difference in knowledge, administration, or accessibility of medications (p=.29); and a collaborative case management program (16-month program of assessment, meeting, and monthly follow-up telephone calls) that reduced perceived caregiver burden (p=.03). Quasi-experimental trials included collaborative care transitional coaches, an outpatient collaborative care model, and education and training programs. Of these, educational interventions showed improvements in self-efficacy, confidence, and preparedness. The collaborative care intervention reduced rehospitalizations (p=.04) and improved quality-of-care outcomes. CONCLUSION: Although some interventions improved caregiver medication knowledge and self-efficacy, effects on clinical outcomes and healthcare use were insufficiently studied. Two studies implementing collaborative care models with medication management components showed potential for improvement in quality of clinical care and reductions in healthcare visits and warrant further study with respect to medication safety. J Am Geriatr Soc 66:2128-2135, 2018.Item Caring for parents with neurodegenerative disease: a qualitative description(2013-08) Habermann, Barbara; Hines, Dana; Davis, LindaPURPOSE/OBJECTIVE: The objective of this study was to explore the positive aspects experienced by adult children in providing care to their parent who has either Parkinson's or Alzheimer's disease. DESIGN:A qualitative descriptive approach was used to analyze audiotaped in-depth semistructured interviews that were conducted with 34 adult children who were primary caregivers as part of a larger randomized clinical trial. SETTING: Individual interviews were conducted by trained research assistants in the caregiver's home. SAMPLE: Thirty-four adult children caregivers who were primary caregivers for their respective 34 parents. Seventy-six percent (n = 26) of the caregivers were caring for a parent with Alzheimer's disease. Twenty-four percent (n = 8) were caring for a parent with Parkinson's disease. Eighty-two percent were adult daughters. Mean age of the caregiver was 52 years, and the mean age of the parent was 81 years. Fifty-three percent of caregivers were white, and 47% were black. DATA ANALYSIS: A conventional content analysis was performed to summarize themes. FINDINGS: Results indicated that most caregivers had positive experiences. Three relationship-centered themes were identified: spending and enjoying time together, appreciating each other and becoming closer, and giving back care. A small number of caregivers (n = 6) could not identify positive experiences. CONCLUSION/IMPLICATIONS: Caregivers who had positive experiences in caregiving expressed fewer feelings of being overwhelmed or distressed by their situations. Further study is needed on caregivers who do not experience positive aspects in caring for a parent, and these caregivers potentially may be a group that warrants further intervention by advanced practice nurses.Item Characterizing Burden, Role Strains and Psychological Distress of Husbands of Breast Cancer Patients During Treatment and Beyond(Wolters Kluwer, 2011) Wagner, Christina D.; Das, Lala Tanmoy; Bigatti, Silvia M.; Storniolo, Anna MariaBackground: Husbands, as the primary providers of support for women with breast cancer, can experience significant burden and role strain, but also perceive positive aspects to the caregiving. Little is known about the specific caregiving tasks husbands perform, for how long, or how burden and positive aspects relate to later psychological distress. Objective: Our primary aim was to better characterize the caregiving responsibilities and role strains of husbands during active cancer treatment and 1 year later. We also evaluated positive aspects during active treatment. Our second aim was to determine which of these predicted psychological distress 1 year later. Methods: Husbands of women undergoing chemotherapy for breast cancer completed a battery of surveys during the time of wives' treatment and again 1 year later. Results: Husbands performed a variety of caregiving tasks for wives during and after breast cancer treatment and also reported benefits associated with caregiving. Breast cancer-related worries were high at both time points. At 1 year after treatment, role strains improved in the social domain but worsened in the domestic domain. Domestic strains during active treatment were the strongest predictor of 1-year distress. Conclusions: Husbands who report persistent domestic role strain are at high risk for continued psychological distress following their wives' breast cancer treatment. Implications for practice: Health care providers should monitor husbands' caregiver burden regularly. Providing couples with resources to reduce domestic role strain (such as social support and communication training) may prevent or alleviate psychological distress in these husbands.