Browsing by Subject "Caregiver"
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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 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 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.Item Patient and caregiver assessment of the benefits from the clinical use of amyloid PET imaging(Wolters Kluwer, 2018-01) Mustafa, Rafid; Brosch, Jared R.; Rabinovici, Gil D.; Dickerson, Brad; Carrillo, Maria C.; Glazier, Brad; Gao, Sujuan; Tierney, Martha; Fargo, Keith N.; Austrom, Mary G.; De Santi, Susan; Clark, David G.; Apostolova, Liana; Neurology, School of MedicineINTRODUCTION: Few studies to date have explored patient and caregiver views on the clinical use of amyloid positron emission tomography (PET). METHODS: A 7-item questionnaire assessing patient and caregiver views (510 total respondents) toward amyloid PET imaging was advertised broadly through alz.org/trialmatch. RESULTS: We received 510 unique responses from 48 US states, 2 Canadian provinces, the Dominican Republic, and Greece. Both patients and caregivers indicated that they would want to receive amyloid imaging if offered the opportunity. Over 88% of respondents had a positive response (∼10% with neutral and 2% with negative responses) to whether amyloid PET should be offered routinely and be reimbursed. Such information was felt to be useful for long-term legal, financial, and health care planning. Respondents identifying with early age cognitive decline (younger than 65 y) were more likely to explore options for disability insurance (P=0.03). Responders from the Midwest were more likely to utilize information from amyloid imaging for legal planning (P=0.02), disability insurance (P=0.02), and life insurance (P=0.04) than other US regions. DISCUSSION: Patients and caregivers supported the use of amyloid PET imaging in clinical practice and felt that the information would provide significant benefits particularly in terms of future planning.Item Qualitative analysis of older adults' experiences with sepsis(2018-04-04) Hancock, Rebecca D.; Buelow, Janice; Miller, Wendy R.; Latham-Mintus, Kenzie; Brooks, JoAnnAtypical symptoms, multiple co-morbidities and a lack of public awareness make it difficult for older adults to know when to seek help for sepsis. Diagnosis delays contribute to older adults’ higher sepsis mortality rates. This research describes patients’ and caregivers’ experiences with the symptom appraisal process, self-management strategies, provider-nurse-patient interactions, and barriers when seeking sepsis care. Convenience and purposive stratified sampling were utilized on two data sources. A nurse-patient and nurse-family caregivers were interviewed. Online stories by older adult patient survivors or family members from the Faces of Sepsis ™ Sepsis Alliance website were analyzed. Emergent themes were identified using qualitative descriptive methods. Listlessness and fatigue were most bothersome symptoms for the nurse-family caregivers. Fever, pain and low blood pressure were most common complaints, followed by breathing difficulty, mental status changes and weakness. Patients expressed “excruciating pain” with abdominal and soft tissue sources of infection, and with post-operative sepsis. Concern was expressed that self-management strategies and medications create barriers by masking typical sepsis signs. Health care providers’ interpersonal interactions, lack of awareness of sepsis symptoms and guidelines, complacency towards older adults, and denial by patients were barriers. Further barriers were staff inexperience, delays, care omissions, and tension between health care providers, patients and caregivers—with emerging advocacy by patients and family. In conclusion, providers should assess previous self-management strategies when evaluating symptoms. At primary care visits or hospital discharge, older patients with risk factors need anticipatory guidance for sepsis symptoms and possible emergent infections--specifically patients with pre-existing risk factors such as urinary tract infections, pneumonia, or operative events. Public and professional education are needed to overcome a lack of urgency and understanding of symptoms for diagnosis, treatment and guideline adherence for inpatients and outpatient clinics. Further research on subjective sepsis symptoms may improve patient-clinician communications when evaluating sepsis in older adults.Item Using Technology to Enhance the Well-Being of Caregivers of Persons with Dementia: Implications for Social Work Practice and Policy(2020-12) Yi, Eun-Hye; Adamek, Margaret E.; Hong, Michin; Wilkerson, David; Lu, YvonneDifficulties caring for people living with dementia (PWD) contribute to their family caregivers’ diverse unmet needs and adverse outcomes in health and well-being. This dissertation research explored the influence of macro systems on individual caregivers' well-being reflecting on the prevalence of online use among caregivers. Caregivers have migrated to online platforms to seek support. However, there is limited understanding of how online social support [OnSS] compares to offline support [OffSS] in terms of caregivers’ well-being. The first study examined the associations of OnSS and OffSS with the psychological well-being [MH] of caregivers. A subsample of the Health Information National Trends Survey (HINTS) from 2017 to 2018 (n=264) was analyzed. The data indicate that OnSS supplemented rather than replaced OffSS. Emotional support delivered offline had a positive direct association with MH, while OnSS did not. OffSS interacted with caregiving stressors while OnSS interacted with life stressors. Caregivers who are in less favorable situations, such as working part-time while caring for a PWD, living with economic hardship, and being unhealthy, tended to be significantly affected by OnSS. The results suggest that practitioners need to incorporate caregivers’ OffSS into OnSS to maximize the available support resources, specifically for those who are in less favorable conditions. There is limited understanding of caregivers’ experiences within the complex health care system, especially after the significant policy changes brought about by the Affordable Care Act (ACA). The second study analyzed caregivers’ perceptions of and experiences with the ACA using national online forum data posted in 2011-2017 (n=514 posts). Text-mining thematic analysis method was used to analyze the posts. Three overall themes emerged: (a) concern about cost implications of placement decisions for care recipients, (b) skepticism about government and healthcare system support of their caregiving roles, and (c) caregivers’ own well-being and concerns about health insurance. Efforts are needed to enhance clear and effective communication among policymakers and health professionals serving service users, including caregivers of PWD. The present dissertation provides preliminary evidence to increase understanding of the complex contexts that affect the overall well-being of caregivers. Implications and suggestions for practitioners, policymakers, and researchers are discussed.Item Viral suppression among children and their caregivers living with HIV in western Kenya(Wiley, 2019-04) Humphrey, John M.; Genberg, Becky L.; Keter, Alfred; Musick, Beverly; Apondi, Edith; Gardner, Adrian; Hogan, Joseph W.; Wools-Kaloustian, Kara; Medicine, School of MedicineINTRODUCTION: Despite the central role of caregivers in managing HIV treatment for children living with HIV, viral suppression within caregiver-child dyads in which both members are living with HIV is not well described. METHODS: We conducted a retrospective analysis of children living with HIV <15 years of age and their caregivers living with HIV attending HIV clinics affiliated with the Academic Model Providing Access to Healthcare (AMPATH) in Kenya between 2015 and 2017. To be included in the analysis, children and caregivers must have had ≥1 viral load (VL) during the study period while receiving antiretroviral therapy (ART) for ≥6 months, and the date of the caregiver's VL must have occurred ±90 days from the date of the child's VL. The characteristics of children, caregivers and dyads were descriptively summarized. Multivariable logistic regression was used to estimate the odds of viral non-suppression (≥ 1000 copies/mL) in children, adjusting for caregiver and child characteristics. RESULTS: Of 7667 children who received care at AMPATH during the study period, 1698 were linked to a caregiver living with HIV and included as caregiver-child dyads. For caregivers, 94% were mothers, median age at ART initiation 32.8 years, median CD4 count at ART initiation 164 cells/mm3 and 23% were not virally suppressed. For children, 52% were female, median age at ART initiation 4.2 years, median CD4 values at ART initiation were 15% (age < 5 years) and 396 cells/mm3 (age ≥ 5 years), and 38% were not virally suppressed. In the multivariable model, children were found more likely to not be virally suppressed if their caregivers were not suppressed compared to children with suppressed caregivers (aOR = 2.40, 95% CI: 1.86 to 3.10). Other characteristics associated with child viral non-suppression included caregiver ART regimen change prior to the VL, caregiver receipt of a non-NNRTI-based regimen at the time of the VL, younger child age at ART initiation and child tuberculosis treatment at the time of the VL. CONCLUSIONS: Children were at higher risk of viral non-suppression if their caregivers were not virally suppressed compared to children with suppressed caregivers. A child's viral suppression status should be closely monitored if his or her caregiver is not suppressed.