Browsing by Subject "Caregiver"
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Item A Pilot Randomized Controlled Trial Investigating MBSR for Parkinson’s Disease Patients and Their Caregiving Partners: Effects on Distress, Social support, Cortisol, and Inflammation(Springer, 2022) Siwik, Chelsea J.; Phillips, Kala; Litvan, Irene; Salmon, Paul; Rodgers, Allison; Jablonski, Megan; Sephton, Sandra E.; Psychology, School of ScienceObjectives: To examine the preliminary effects of the mindfulness-based stress reduction (MBSR) program in the management of biopsychosocial stress–related changes associated with Parkinson’s disease (PD) among patient/caregiving-partner dyads. Methods: PD patient/caregiving-partner dyads (N = 18) early in the disease trajectory were recruited from a university-affiliated movement disorders clinic and were randomized (1:1) to either the MBSR intervention or the control condition (treatment as usual [TAU]). Mixed methods ANOVAs were conducted to examine primary outcomes (disease-specific distress, perceived social support, circadian rhythmicity [cortisol], and markers of inflammation [IL-6, TNF-alpha, IL-1beta]) between groups (MBSR vs. TAU) among patients and caregiving partners separately. Results: No participants were lost to follow-up. Given the pilot nature of the current investigation, findings should be interpreted as exploratory opposed to confirmatory. Following MBSR, PD patients reported an increase in disease-specific distress and intrusive thoughts and demonstrated a decrease in mean bedtime cortisol and IL-1beta from baseline to follow-up compared to TAU. Caregiving partners who received MBSR reported an increase in perceived social support and demonstrated improved rhythmicity of diurnal cortisol slopes from baseline to follow-up compared to TAU. Conclusions: Both patients and caregiving partners who received MBSR demonstrated improvements in biomarkers of circadian function, and patients evidenced a decrease in a biomarker of systemic inflammation, pointing to an important area of further investigation. Given that patients reported an increase in disease-specific distress and intrusive thoughts, the salutary effects of MBSR may be experienced physiologically prior to, or in lieu of, psychological effects, although this should be explored further, especially given the improvement in perceived social support reported by caregiving partners.Item An mHealth App to Support Caregivers in the Medical Management of Their Child With Cancer: Co-design and User Testing Study(JMIR, 2022-03-16) Mueller, Emily L.; Cochrane, Anneli R.; Campbell, Madison E.; Nikkhah, Sarah; Miller, Andrew D.; Pediatrics, School of MedicineBackground: Caregivers face new challenges and tasks when their child is diagnosed with cancer, which can be overwhelming. Mobile technology has the capacity to provide immediate support at their fingertips to aid in tracking symptoms, managing medication, and planning for emergencies. Objective: The objective of this study is to engage directly with end users and proxies to co-design and create a mobile technology app to support caregivers in the medical management of their child with cancer. Methods: We engaged directly with caregivers of children with cancer and pediatric oncology nurse coordinators (proxy end users) to co-design and create the prototype of the Cope 360 mobile health app. Alpha testing was accomplished by walking the users through a series of predetermined tasks that encompassed all aspects of the app including tracking symptoms, managing medications, and planning or practicing for a medical emergency that required seeking care in the emergency department. Evaluation was accomplished through recorded semistructured interviews and quantitative surveys to capture demographic information and measure the system usability score. Interviews were transcribed and analyzed iteratively using NVivo (version 12; QSR International). Results: This study included 8 caregivers (aged 33-50 years) of children with cancer, with most children receiving chemotherapy, and 6 nurse coordinators, with 3 (50%) of them having 11 to 20 years of nursing experience. The mean system usability score given by caregivers was 89.4 (95% CI 80-98.8). Results were grouped by app function assessed with focus on specific attributes that were well received and those that required refinement. The major issues requiring refinement included clarity in the medical information and terminology, improvement in design of tasks, tracking of symptoms including adjusting the look and feel of certain buttons, and changing the visual graph used to monitor symptoms to include date anchors. Conclusions: The Cope 360 app was well received by caregivers of children with cancer but requires further refinement for clarity and visual representation. After refinement, testing among caregivers in a real-world environment is needed to finalize the Cope 360 app before its implementation in a randomized controlled trial.Item Are there gender, racial or relationship differences in caregiver task difficulty, depressive symptoms and life changes among stroke family caregivers?(Taylor & Francis, 2015) Jessup, Nenette M.; Bakas, Tamilyn; McLennon, Susan M.; Weaver, Michael T.; IU School of NursingOBJECTIVE: To examine differences in caregiver perceptions of task difficulty, depressive symptoms and life changes based on caregiver characteristics of gender, race and type of relationship to the person with stroke. METHODS: A sample of 243 stroke caregivers (females n = 191; males n = 52; non-African Americans n = 184; African Americans n = 59; non-spouses n = 127; spouses n = 116) were interviewed by telephone within 8 weeks of the survivor's discharge to home. Measures included the Oberst Caregiving Burden Scale (OCBS) for task difficulty, Patient Health Questionnaire (PHQ-9) for depressive symptoms and Bakas Caregiving Outcomes Scale (BCOS) for life changes. Three general linear models computed differences in OCBS, PHQ9 and OCBS scores. RESULTS: Significant differences were found on the OCBS for females (p < 0.001) and African American spouses (p < 0.048); on the PHQ9 for females (p < 0.001), non-African Americans (p = 0.047), spouses (p = 0.003) and African-American spouses (p = 0.010); and on the BCOS for females (p = 0.008) and non-African Americans (p = 0.033). CONCLUSIONS: Findings suggest that female and non-African American stroke caregivers are relatively more likely to experience task difficulty, depressive symptoms and negative life changes as a result of providing care. African American spouses were also at risk. Tailoring interventions based on caregivers' characteristics may improve outcomes.Item Caregiver Adaptation among Black and White Families of Individuals with Autism Spectrum Disorder and the Comparison of the Two Racial Groups(2020-08) Yu, Yue; McGrew, John; Mosher, Catherine; Zapolski, Tamika; Wu, Wei; Ruble, LisaTo date, only two studies, both using the same sample at two different time points, have quantitatively examined outcomes in Black caregivers of individuals with autism spectrum disorder (ASD). This study examined family adaptational outcomes in Black and White caregivers of individuals with ASD using the double ABCX model of family adaptation to examine the impacts of stressors, the A in the model (e.g., autism symptom severity, general life demands), resources/supports, the B in the model (e.g., social support), and individual coping/stress appraisal styles, the C in the model (e.g., cognitive appraisal, religious coping) on caregiver positive and negative adaptation outcomes, the X in the model, (e.g., caregiver strain, benefit finding, family quality of life). Black and White caregivers were compared on adaptation outcomes at the family, dyadic, and individual level, including both positively valenced (e.g., benefit finding) and negatively valenced outcomes (e.g., depression, caregiver strain). Participants were Black (N = 24) and White (N = 32) primary caregivers of individuals with ASD. Racial differences were found for both the general and racial-specific factors in the ABCX model. White and Black caregivers reported moderate and equal levels of caregiver strain. However, Black caregivers reported greater levels of anxiety and depression and lower levels of life satisfaction. When adjusting for potential ABC covariates, racial differences in outcomes were no longer significant. That is, racial differences in outcomes could be explained by differences in the proximal elements represented by the ABC variables of the model (e.g., passive-avoidance coping, religious coping). Black caregivers reported higher levels of pile-up of demands, formal social support, threat appraisal, passive-avoidance coping, and positive and negative religious coping than White caregivers. Different factors were related to caregiver strain in the two racial groups. Conscientiousness was a protective factor against caregiver strain for Black caregivers, whereas greater use of passive-avoidance coping and threat appraisal, higher levels of neuroticism and barriers to care, and lower levels of satisfaction with services, parenting self-efficacy, and formal social support were explanatory factors for increased caregiver strain among White caregivers. These results are helpful in informing interventions and support the cultural adaptation of care as provided to Black caregivers of individuals with ASD.Item Caregiver Comfort in Adolescents Independently Completing Screening Tablet-Based Questionnaires at Primary Care Visits(Elsevier, 2019-09-12) Ferrin, Stephanie N.; Grout, Randall W.; Gilbert, Amy Lewis; Wilkinson, Tracey A.; Cheng, Erika R.; Downs, Stephen M.; Aalsma, Matthew C.; Pediatrics, School of MedicineObjectives The objective of this study was to assess caregiver comfort regarding adolescent completion of computerized health screening questionnaires created for adolescents. Design We conducted a mixed method, cross-sectional survey of caregivers of adolescent patients (n=104) ages 12–18 years that had a medical visit between June and August of 2017. Topics assessed included who completed the questionnaire, caregiver comfort and concern regarding questionnaire data, and caregiver reasons for involvement in completing the questionnaire. A one-way ANOVA was used to compare age of the adolescent and caregiver involvement in the questionnaire. Results The majority of adolescents (64%) reported independent completion of the questionnaire. Thirteen percent of caregivers completed the questionnaire with no involvement of the adolescent and 23% reported that caregivers and adolescents completed the questionnaire in tandem. The majority of caregivers (84%) were comfortable with adolescents completing the questionnaire. A variety of reasons were identified for caregivers completing the questionnaire (time constraints, 22%; adolescent requested caregiver help, 19%; caregiver desired to answer questions, 14%; caregiver did not realize that the questionnaire was intended for the adolescent, 11%; caregiver believed that the adolescent was too young to respond alone, 11%. Caregiver comfort with adolescent completing the questionnaire increase with age. Conclusion We found the reason most caregivers gave for completing the questionnaires were related to clinic processes (e.g. time constraints) Caregivers were more likely to complete the questionnaire with younger adolescents. Thus, pediatricians should consider how to best prepare families for initial questionnaires in primary care.Item Caregiver Engagement Enhances Outcomes among Randomized Control Trials of Transitional Care Interventions: A Systematic Review and Meta-Analysis(Wolters Kluwer, 2022) Levoy, Kristin; Rivera, Eleanor; McHugh, Molly; Hanlon, Alexandra; Hirschman, Karen B.; Naylor, Mary D.; School of NursingBackground: Fluctuations in health among chronically ill adults result in frequent health care transitions. Some interventions to improve patient outcomes after hospitalization include caregiver engagement as a core component, yet there is unclear evidence of the effects of this component on outcomes. Objective: The objective of this study was to synthesize evidence regarding the attention given to caregiver engagement in randomized control trials of transitional care interventions (TCIs), estimate the overall intervention effects, and assess caregiver engagement as a moderator of intervention effects. Methods: Three databases were systematically searched for randomized control trials of TCIs targeting adults living with physical or emotional chronic diseases. For the meta-analysis, overall effects were computed using the relative risk (RR) effect size and inverse variance weighting. Results: Fifty-four studies met criteria, representing 31,291 participants and 66 rehospitalizations effect sizes. Half (51%) the interventions lacked focus on caregiver engagement. The overall effect of TCIs on all-cause rehospitalizations was nonsignificant at 1 month (P=0.107, k=29), but significant at ≥2 months [RR=0.89; 95% confidence interval (CI): 0.82, 0.97; P=0.007, k=27]. Caregiver engagement moderated intervention effects (P=0.05), where interventions with caregiver engagement reduced rehospitalizations (RR=0.83; 95% CI: 0.75, 0.92; P=0.001), and those without, did not (RR=0.97; 95% CI: 0.87, 1.08; P=0.550). Interventions with and without caregiver engagement did not differ in the average number of components utilized, however, interventions with caregiver engagement more commonly employed baseline needs assessments (P=0.032), discharge planning (P=0.006), and service coordination (P=0.035). Discussion: Future TCIs must consistently incorporate the active participation of caregivers in design, delivery, and evaluation.Item Divergent Caregiver and Youth Perspectives Regarding Behavioral Health Needs and Psychosocial Functioning: An Exploratory Study(2019-11-05) Karikari, Isaac; Walton, Betty A.; Bishop, ChristineBackground. To promote effectiveness in behavioral health treatment, the system of care framework and wraparound model accentuate inclusion of family and youth as important stakeholders, not just as consumers. This has challenged conventional practices; and youth and caregivers' perspectives have become integral to treatment planning and service delivery. This study explored caregivers and youth's perspectives of behavioral health needs and psychosocial functioning. Methods. This exploratory study utilized data collected in a Midwestern, suburban county as part of the national Child and Family Study of youth with complex behavioral health needs enrolled in the Child Mental Health Wraparound initiative. The sample consisted of 25 caregiver-youth pairs. Assessment measures included the Pediatric Symptom Checklist (PSC) and the Columbia Impairment Scale (CIS). Independent t-tests were used to examine differences in caregiver and youth perspectives. Results. Significant differences were identified in caregivers and youth's perspectives of youth's behavioral health on the PSC, but no significant differences between caregivers and youth on the CIS measure. Responses showed that compared to youth, caregivers perceived a higher level of functional impairment in interpersonal relationships, academic, and community functioning. Further, caregivers' views of severity of functional impairment varied based on the caregiver type. Conclusion. Divergent perspectives regarding youth's behavioral health needs and functioning between caregivers and youth have implications for behavioral health treatment planning and service delivery. Additional research is needed on collaborative assessments and implications of different views for practice and outcomes.Item Exploring Factors Contributing to Caregiver Burden in Family Caregivers of Congolese Adults with Suspected Dementia(Wiley, 2023) Ikanga, Jean; Reyes, Anny; Zhao, Liping; Hill-Jarrett, Tanisha G.; Hammers, Dustin; Epenge, Emmanuel; Esambo, Herve; Kavugho, Immaculée; Esselakoy, Christian; Gikelekele, Guy; Tshengele, Nathan; Alonso, Alvaro; Robinson-Lane, Sheria G.; Neurology, School of MedicineIntroduction: Predicting caregiver burden in individuals with suspected dementia - is critical due to the debilitating nature of these disorders and need for caregiver support. While some examination of the factors affecting burden has been undertaken in Sub-Saharan Africa, each country presents with its own unique challenges and obstacles. This pilot study investigates predictors of caregiver burden in family caregivers of individuals with suspected dementia living in the Democratic Republic of the Congo (DRC). Methods: Linear and multiple regression analyses were conducted to explore factors associated with caregiver burden in 30 patient-caregiver dyads with the Zarit Burden Interview (ZBI) for caregiver burden evaluation. Cognitive impairments of patients were assessed using the Community Screening Instrument for Dementia, Alzheimer's Questionnaire (AQ), the African Neuropsychology Battery, and the Neuropsychiatric Symptoms Inventory (NPI). Results: Average caregiver burden on the ZBI was 36.1 (SD = 14.6; range = 12-58). Greater impairments in patient cognition (orientation, visuospatial, memory, executive functioning), fragility, and neuropsychiatric symptoms (delirium, agitation, depression) were predictive of caregiver burden. After controlling for AQ scores and caregiver gender, greater symptoms of depression, and worse performances on verbal memory and problem solving were associated with greater caregiver burden. Conclusion: Worsening patient fragility, cognition, functioning, and neuropsychiatric symptoms influenced caregiver burden in caregivers of individuals with suspected cognitive impairment in the DRC. These findings are consistent with the prior literature. Future studies may wish to explore supportive factors and caregiver specific characteristics that buffer against perceived burden.Item Feasibility and acceptability of an acceptance and commitment therapy intervention for caregivers of adults with Alzheimer’s disease and related dementias(BMC, 2021-02-16) Fowler, Nicole R.; Judge, Katherine S.; Lucas, Kaitlyn; Gowan, Tayler; Stutz, Patrick; Shan, Mu; Wilhelm, Laura; Parry, Tommy; Johns, Shelley A.; Medicine, School of MedicineBackground: Caregivers of patients with Alzheimer's disease or a related dementia (ADRD) report high levels of distress, including symptoms of anxiety and depression, caregiving burden, and existential suffering; however, those with support and healthy coping strategies have less stress and burden. Acceptance and Commitment Therapy (ACT) aims to foster greater acceptance of internal events while promoting actions aligned with personal values to increase psychological flexibility in the face of challenges. The objective of this single-arm pilot, Telephone Acceptance and Commitment Therapy Intervention for Caregivers (TACTICs), was to evaluate the feasibility, acceptability, and preliminary effects of an ACT intervention on ADRD caregiver anxiety, depressive symptoms, burden, caregiver suffering, and psychological flexibility. Methods: ADRD caregivers ≥21 years of age with a Generalized Anxiety Disorder Scale (GAD-7) score ≥ 10 indicative of moderate or higher symptoms of anxiety were enrolled (N = 15). Participants received a telephone-based ACT intervention delivered by a non-licensed, bachelor's-prepared trained interventionist over 6 weekly 1-h sessions that included engaging experiential exercises and metaphors designed to increase psychological flexibility. The following outcome measures were administered at baseline (T1), immediately post-intervention (T2), 3 months post-intervention (T3), and 6 months post-intervention (T4): anxiety symptoms (GAD-7; primary outcome); secondary outcomes of depressive symptoms (Patient Health Questionnaire-9), burden (Zarit Burden Interview), suffering (The Experience of Suffering measure), psychological flexibility/experiential avoidance (Acceptance and Action Questionnaire-II), and coping skills (Brief COPE). Results: All 15 participants completed the study and 93.3% rated their overall satisfaction with their TACTICs experience as "completely satisfied." At T2, caregivers showed large reduction in anxiety symptoms (SRM 1.42, 95% CI [0.87, 1.97], p < 0.001) that were maintained at T3 and T4. At T4, psychological suffering (SRM 0.99, 95% CI [0.41, 1.56], p = 0.0027) and caregiver burden (SRM 0.79, 95% CI [0.21, 1.37], p = 0.0113) also decreased. Conclusions: Despite a small sample size, the 6-session manualized TACTICs program was effective in reducing anxiety, suggesting that non-clinically trained staff may be able to provide an effective therapeutic intervention by phone to maximize intervention scalability and reach.Item The impact of personality traits on outcomes of caregivers of individuals with Autism Spectrum Disorder in the transition period(2017) Yu, Yue; McGrew, John H.The study examined the impact of the “big 5” personality traits on caregiver burden during the period when individuals with ASD transition from high school. Participants (N = 117) were caregivers of individuals with ASD who either will graduate within two years or graduated from high school within the past two years. Participants completed questionnaires measuring study variables predicted to be associated with caregiver burden as guided by the Double ABCX model of family adaptation, i.e., autism symptom severity, problem behaviors, pile-up of life demands, personality traits, social support, cognitive appraisals, and coping strategies. Primary caregivers reported moderate burden in the transition period. Specifically, although caregivers experienced stress in the transition period, they were less overwhelmed than the period when one’s child first receive the ASD diagnosis. Increased problem behaviors, higher neuroticism, lower extraversion, conscientiousness, and agreeableness, lower levels of social support, fewer use of challenge appraisals, and greater use of threat appraisals and passive-avoidance coping strategies predicted greater caregiver burden. Passive-avoidance coping mediated the relationship between caregiving stress and four personality traits respectively (i.e., neuroticism, extraversion, conscientiousness, and agreeableness). The results support the potential importance of personality traits in explaining differences in caregiver stress in families of those with ASD and further indicated that the association between personality and burden was mediated by caregivers’ use of maladaptive coping strategies, i.e., passive-avoidance coping. The findings also have potential applicability for interventions to reduce caregiver burden. Several factors were identified that could help alleviate the stress. For example, parents should be encouraged to avoid using threat appraisals and passive-avoidance coping strategies. In addition, interventions could be developed to provide support or strategies to parents to handle child’s behavioral problems and thus reduce stress.