Browsing by Author "Jessup, Nenette M."

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    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 Nursing
    OBJECTIVE: 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.
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    Comparing treatment fidelity between study arms of a randomized controlled clinical trial for stroke family caregivers
    (Sage, 2016-05) McLennon, Susan M.; Hancock, Rebecca D.; Redelman, Kathleen; Scarton, Lisa L.; Riley, Elizabeth; Sweeney, Bobbie; Habermann, Barbara; Jessup, Nenette M.; Bakas, Tamilyn; School of Nursing
    OBJECTIVE: To compare treatment fidelity among treatment arms in the Telephone Assessment and Skill-Building Kit study for stroke caregivers (TASK II) with respect to: 1) protocol adherence; 2) intervention dosage and 3) nurse intervener perspectives. DESIGN: A randomized controlled clinical trial design. SETTING: Urban, community, midwestern United States. SUBJECTS: A total of 254 stroke caregivers (mean ±SD age, 54.4 ±11.8 years), 55 (22.0%) males and 199 (78.4%) females) randomized to the TASK II intervention (n=123) or an Information, Support, and Referral comparison group (n=131). INTERVENTIONS: TASK II participants received the TASK II Resource Guide; Information, Support, and Referral participants received a standard caregiver brochure. At approximately 8 weeks after discharge, both groups received 8 weekly calls from a nurse, with a booster call 4 weeks later. MEASURES: Protocol adherence was evaluated with the TASK II Checklist for Monitoring Adherence. Intervention dosage was measured by the number of minutes caregivers spent reading materials and talking with the nurse. Nurse intervener perspectives were obtained through focus groups. RESULTS: Protocol adherence was 80% for the TASK II and 92% for the Information, Support, and Referral. As expected, intervention dosage differed between TASK II and Information, Support, and Referral with respect to caregiver time spent reading materials (t=-6.49; P<.001) and talking with the nurse (t=-7.38; P<.001). Focus groups with nurses yielded further evidence for treatment fidelity and recommendations for future trials. CONCLUSIONS: These findings substantiate treatment fidelity in both study arms of the TASK II stroke caregiver intervention trial (NIH R01NR010388; ClinicalTrials.govNCT01275495).
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    Designing a Multimodal and Culturally Relevant Alzheimer Disease and Related Dementia Generative Artificial Intelligence Tool for Black American Informal Caregivers: Cognitive Walk-Through Usability Study
    (JMIR, 2025-01-08) Bosco, Cristina; Otenen, Ege; Torres, John Osorio; Nguyen, Vivian; Chheda, Darshil; Peng, Xinran; Jessup, Nenette M.; Himes, Anna K.; Cureton, Bianca; Lu, Yvonne; Hill, Carl V.; Hendrie, Hugh C.; Barnes, Priscilla A.; Shih, Patrick C.; School of Nursing
    Background: Many members of Black American communities, faced with the high prevalence of Alzheimer disease and related dementias (ADRD) within their demographic, find themselves taking on the role of informal caregivers. Despite being the primary individuals responsible for the care of individuals with ADRD, these caregivers often lack sufficient knowledge about ADRD-related health literacy and feel ill-prepared for their caregiving responsibilities. Generative AI has become a new promising technological innovation in the health care domain, particularly for improving health literacy; however, some generative AI developments might lead to increased bias and potential harm toward Black American communities. Therefore, rigorous development of generative AI tools to support the Black American community is needed. Objective: The goal of this study is to test Lola, a multimodal mobile app, which, by relying on generative AI, facilitates access to ADRD-related health information by enabling speech and text as inputs and providing auditory, textual, and visual outputs. Methods: To test our mobile app, we used the cognitive walk-through methodology, and we recruited 15 informal ADRD caregivers who were older than 50 years and part of the Black American community living within the region. We asked them to perform 3 tasks on the mobile app (ie, searching for an article on brain health, searching for local events, and finally, searching for opportunities to participate in scientific research in their area), then we recorded their opinions and impressions. The main aspects to be evaluated were the mobile app's usability, accessibility, cultural relevance, and adoption. Results: Our findings highlight the users' need for a system that enables interaction with different modalities, the need for a system that can provide personalized and culturally and contextually relevant information, and the role of community and physical spaces in increasing the use of Lola. Conclusions: Our study shows that, when designing for Black American older adults, a multimodal interaction with the generative AI system can allow individuals to choose their own interaction way and style based upon their interaction preferences and external constraints. This flexibility of interaction modes can guarantee an inclusive and engaging generative AI experience.
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    A Randomized Trial to Compare a Tailored Web-Based Intervention and Tailored Phone Counseling to Usual Care for Increasing Colorectal Cancer Screening
    (AACR, 2018-12) Champion, Victoria L.; Christy, Shannon M.; Rakowski, William; Gathirua- Mwangi, Wambui G.; Tarver, Will L.; Carter-Harris, Lisa; Cohee, Andrea A.; Marley, Andrew R.; Jessup, Nenette M.; Biederman, Erika; Kettler, Carla D.; Stump, Timothy E.; Monahan, Patrick; Lairson, David R.; Rawl, Susan M.; School of Nursing
    Background: Colorectal cancer mortality could be decreased with risk-appropriate cancer screening. We examined the efficacy of three tailored interventions compared with usual care for increasing screening adherence. Methods: Women (n = 1,196) ages 51 to 74, from primary care networks and nonadherent to colorectal cancer guidelines, were randomized to (1) usual care, (2) tailored Web intervention, (3) tailored phone intervention, or (4) tailored Web + phone intervention. Average-risk women could select either stool test or colonoscopy, whereas women considered at higher than average risk received an intervention that supported colonoscopy. Outcome data were collected at 6 months by self-report, followed by medical record confirmation (attrition of 23%). Stage of change for colorectal cancer screening (precontemplation or contemplation) was assessed at baseline and 6 months. Results: The phone (41.7%, P < 0.0001) and combined Web + phone (35.8%, P < 0.001) interventions significantly increased colorectal cancer screening by stool test compared with usual care (11.1%), with ORs ranging from 5.4 to 6.8 in models adjusted for covariates. Colonoscopy completion did not differ between groups except that phone significantly increased colonoscopy completion compared with usual care for participants in the highest tertile of self-reported fear of cancer. Conclusions: A tailored phone with or without a Web component significantly increased colorectal cancer screening compared with usual care, primarily through stool testing, and phone significantly increased colonoscopy compared with usual care but only among those with the highest levels of baseline fear. Impact: This study supports tailored phone counseling with or without a Web program for increasing colorectal cancer screening in average-risk women.
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    Task difficulty and life changes among stroke family caregivers: relationship to depressive symptoms
    (Elsevier, 2014-12) McLennon, Susan M.; Bakas, Tamilyn; Jessup, Nenette M.; Habermann, Barbara; Weaver, Michael T.; School of Nursing
    OBJECTIVES: To investigate differences in stroke caregiver task difficulty and life changes based on level of caregiver depressive symptoms, and to estimate probabilities among task difficulty and life change items. DESIGN: Descriptive analysis of baseline data from an ongoing stroke caregiver intervention trial. SETTING: Hospitals and rehabilitation facilities. PARTICIPANTS: Caregivers (N=242; 78.6% women; 47.7% spouses; 71.8% white; mean age, 54.2±12.1y) caring for stroke survivors within 8 weeks of discharge to home. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Baseline measures for task difficulty (Oberst Caregiving Burden Scale) and life changes (Bakas Caregiving Outcomes Scale) were compared based on level of depressive symptoms (Patient Health Questionnaire-9 [PHQ-9] scores <5 means no depressive symptoms; n=126; PHQ-9 scores ≥5 means mild to severe depressive symptoms, n=116). Mean scores were analyzed using general linear modeling, with item analyses using logistic regression and the Benjamini-Hochberg method to control type I error inflation. RESULTS: Caregivers with mild to severe depressive symptoms have greater difficulty with tasks and worse life changes than those with no depressive symptoms (P<.001). Odds ratios were highest for the task of arranging care while away and for negative life changes (eg, addressing self-esteem, coping with stress, physical health). CONCLUSIONS: Findings underscore the importance of depressive symptom screening for stroke caregivers during or shortly after discharge. Assisting caregivers with depressive symptoms to arrange for respite care and addressing negative physical and psychological changes may be priority areas for future interventions.
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    Testing 3 Modalities (Voice Assistant, Chatbot, and Mobile App) to Assist Older African American and Black Adults in Seeking Information on Alzheimer Disease and Related Dementias: Wizard of Oz Usability Study
    (JMIR, 2024-12-09) Bosco, Cristina; Shojaei, Fereshtehossadat; Theisz, Alec Andrew; Torres, John Osorio; Cureton, Bianca; Himes, Anna K.; Jessup, Nenette M.; Barnes, Priscilla A.; Lu, Yvonne; Hendrie, Hugh C.; Hill, Carl V.; Shih, Patrick C.; School of Nursing
    Background: Older African American and Black adults are twice as likely to develop Alzheimer disease and related dementias (ADRD) and have the lowest level of ADRD health literacy compared to any other ethnic group in the United States. Low health literacy concerning ADRD negatively impacts African American and Black people in accessing adequate health care. Objective: This study explored how 3 technological modalities-voice assistants, chatbots, and mobile apps-can assist older African American and Black adults in accessing ADRD information to improve ADRD health literacy. By testing each modality independently, the focus could be kept on understanding the unique needs and challenges of this population concerning the use of each modality when accessing ADRD-related information. Methods: Using the Wizard of Oz usability testing method, we assessed the 3 modalities with a sample of 15 older African American and Black adults aged >55 years. The 15 participants were asked to interact with the 3 modalities to search for information on local events happening in their geographical area and search for ADRD-related health information. Results: Our findings revealed that, across the 3 modalities, the content should avoid convoluted and complex language and give the possibility to save, store, and share it to be fully accessible by this population. In addition, content should come from credible sources, including information tailored to the participants' cultural values, as it has to be culturally relevant for African American and Black communities. Finally, the interaction with the tool must be time efficient, and it should be adapted to the user's needs to foster a sense of control and representation. Conclusions: We conclude that, when designing ADRD-related interventions for African American and Black older adults, it proves to be crucial to tailor the content provided by the technology to the community's values and construct an interaction with the technology that is built on African American and Black communities' needs and demands.
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    Tracking Patterns of Needs During a Telephone Follow-up Program for Family Caregivers of Persons with Stroke
    (Taylor and Francis, 2016-09) Bakas, Tamilyn; Jessup, Nenette M.; McLennon, Susan M.; Habermann, Barbara; Weaver, Michael T.; Morrison, Gwendolyn; Economics, School of Liberal Arts
    Purpose Programs that address stroke family caregiver needs and skill-building are recommended based on the literature and patient care guidelines for stroke rehabilitation. The purpose of this study was to explore patterns of perceived needs and skill-building during a stroke caregiver intervention program. Method Descriptive statistics were used to analyze data from 123 stroke caregivers enrolled in the intervention group of a randomized controlled clinical trial. Caregivers received 8 weekly telephone sessions, with a booster session a month later. At each session, the Caregiver Needs and Concerns Checklist (CNCC) was used to identify and prioritize current needs that were then addressed through skill-building strategies. Results Perceived needs changed over time. Information about stroke was the highest priority need during Session 1. Managing survivor emotions and behaviors was the highest priority for Sessions 2 through 4. Caregivers generally waited until Sessions 5 through 9 to address their own emotional and physical health needs. Physical and instrumental care needs were relatively low but stable across all 9 sessions. Skill-building was consistently high, though it peaked during Sessions 2 and 3. Conclusions Tracking patterns of needs and skill-building suggest appropriate timing for targeting different types of family caregiver support during stroke rehabilitation.