Browsing by Subject "Family caregivers"
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Item Acceptance and commitment therapy for patient fatigue interference and caregiver burden in advanced gastrointestinal cancer: Results of a pilot randomized trial(Sage, 2022) Mosher, Catherine E.; Secinti, Ekin; Wu, Wei; Kashy, Deborah A.; Kroenke, Kurt; Bricker, Jonathan B.; Helft, Paul R.; Turk, Anita A.; Loehrer, Patrick J., Sr.; Sehdev, Amikar; Al-Hader, Ahmad A.; Champion, Victoria L.; Johns, Shelley A.; Psychology, School of ScienceBackground: Fatigue often interferes with functioning in patients with advanced cancer, resulting in increased family caregiver burden. Acceptance and commitment therapy, a promising intervention for cancer-related suffering, has rarely been applied to dyads coping with advanced cancer. Aim: To examine the feasibility, acceptability, and preliminary efficacy of acceptance and commitment therapy for patient-caregiver dyads coping with advanced gastrointestinal cancer. Primary outcomes were patient fatigue interference and caregiver burden. Design: In this pilot trial, dyads were randomized to six weekly sessions of telephone-delivered acceptance and commitment therapy or education/support, an attention control. Outcomes were assessed at baseline and at 2 weeks and 3 months post-intervention. Setting/participants: Forty patients with stage III-IV gastrointestinal cancer and fatigue interference and family caregivers with burden or distress were recruited from two oncology clinics and randomized. Results: The eligibility screening rate (54%) and retention rate (81% at 2 weeks post-intervention) demonstrated feasibility. At 2 weeks post-intervention, acceptance and commitment therapy participants reported high intervention helpfulness (mean=4.25/5.00). Group differences in outcomes were not statistically significant. However, when examining within-group change, acceptance and commitment therapy patients showed moderate decline in fatigue interference at both follow-ups, whereas education/support patients did not show improvement at either follow-up. Acceptance and commitment therapy caregivers showed medium decline in burden at 2 weeks that was not sustained at 3 months, whereas education/support caregivers showed little change in burden. Conclusions: Acceptance and commitment therapy showed strong feasibility, acceptability, and promise and warrants further testing.Item Barriers and Facilitators of Health and Well-Being in Informal Caregivers of Dementia Patients: A Qualitative Study(MDPI, 2023-02-28) Duplantier, Sally C.; Williamson, Francesca A.; Pediatrics, School of MedicineBackground: Given the dramatic projected increase in Alzheimer's disease globally and the increased risk of morbidity and mortality for family caregivers of these patients, there is an urgent need to provide more targeted, timely resources to support the health and well-being of these informal caregivers. Few studies have investigated the barriers to health and well-being and potential strategies to facilitate better self-care from the unique perspective of the caregivers themselves. Purpose: This qualitative study aimed to identify barriers and facilitators to health and well-being for informal caregivers of family members with Alzheimer's. Method: We conducted semi-structured interviews with eight informal caregivers, including daughters, wives, and one husband, ages 32 to 83. Using Reflexive Thematic Analysis, we identified three main themes and subthemes across caregivers' experiences. Findings: We found that caregivers (1) prioritized mental and social well-being over physical health or health behaviors; (2) characterized the subjective burden of caregiving as a "mantle of responsibility" that could not easily be shed due to the complex subjective burden of loss, grief, guilt, resentment, isolation, loneliness, and lack of agency; (3) sought to be recognized as "additional patients", instead of being viewed as invisible patients, with support services tailored to their life stage and challenges. Conclusions: The findings suggest that the subjective burden of strain experienced by family caregivers of Alzheimer's patients has a profound impact on their health and well-being, even more so than the objective burden of strain that is the result of their day-to-day caregiving activities.Item Caregiving experiences predict changes in spiritual well-being among family caregivers of cancer patients(Wiley Online Library, 2014-10) Adams, Rebecca N.; Mosher, Catherine E.; Cannady, Rachel S.; Lucette, Aurelie; Kim, Youngmee; Department of Psychology, School of ScienceOBJECTIVE: Although enhanced spiritual well-being has been linked to positive mental health outcomes among family caregivers of cancer patients, little is known regarding predictors of spiritual well-being in this population. The current study aimed to examine caregiving experiences as predictors of change in family caregivers' spiritual well-being during the initial months following the patient's cancer diagnosis. METHODS: Seventy family caregivers of newly diagnosed cancer patients (74% female, mean age = 59 years) participated in this longitudinal survey. Caregivers completed baseline questionnaires shortly before staying with the patient at an American Cancer Society Hope Lodge. Baseline questionnaires assessed caregiving experiences (i.e., self-esteem related to caregiving, family support for providing care, impact of caregiving on finances, and impact of caregiving on one's schedule). In addition, caregivers' spiritual well-being (i.e., meaning in life, peace, and faith) was assessed at baseline and 4-month follow-up. RESULTS: In univariate analyses, all caregiving experiences studied were associated with one or more aspects of spiritual well-being at 4-month follow-up. However, in the multivariate analysis, the only caregiving experience associated with aspects of spiritual well-being at 4-month follow-up was caregivers' perceptions of family support. Specifically, lack of family support was associated with lower levels of meaning and peace. CONCLUSIONS: Findings point to the importance of family support in facilitating the search for meaning and peace shortly after a loved one's cancer diagnosis and suggest that interventions targeting caregivers' support system may enhance their spiritual well-being.Item 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 NursingOBJECTIVE: 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).Item Correction: Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers(JMIR, 2024-12-31) Jolliff, Anna; Holden, Richard J.; Valdez, Rupa; Coller, Ryan J.; Patel, Himalaya; Zuraw, Matthew; Linden, Anna; Ganci, Aaron; Elliott, Christian; Werner, Nicole E.; Herron School of Art and Design[This corrects the article DOI: 10.2196/60353.].Item Examining the effect of peer helping in a coping skills intervention: a randomized controlled trial for advanced gastrointestinal cancer patients and their family caregivers(Springer Nature, 2018-02) Kohli, Marc; Morrison, James J.; Wawira, Judy; Morgan, Matthew B.; Hostetter, Jason; Genereaux, Brad; Hussain, Mohannad; Langer, Steve G.; Psychology, School of SciencePURPOSE: At the end of life, spiritual well-being is a central aspect of quality of life for many patients and their family caregivers. A prevalent spiritual value in advanced cancer patients is the need to actively give. To address this need, the current randomized trial examined whether adding a peer helping component to a coping skills intervention leads to improved meaning in life and peace for advanced gastrointestinal cancer patients and their caregivers. Feasibility and acceptability outcomes were also assessed. METHODS: Advanced gastrointestinal cancer patients and caregivers (n = 50 dyads) were randomly assigned to a 5-session, telephone-based coping skills intervention or a peer helping + coping skills intervention. One or both dyad members had moderate-severe distress. Peer helping involved contributing to handouts on coping skills for other families coping with cancer. Patients and caregivers completed measures of meaning in life/peace, fatigue, psychological symptoms, coping self-efficacy, and emotional support. Patient pain and caregiver burden were also assessed. RESULTS: Small effects in favor of the coping skills group were found regarding meaning in life/peace at 1 and 5 weeks post-intervention. Other outcomes did not vary as a function of group assignment, with both groups showing small decreases in patient and caregiver fatigue and caregiver distress and burden. High recruitment and retention rates supported feasibility, and high participant satisfaction ratings supported acceptability. CONCLUSIONS: Although a telephone-based intervention is feasible and acceptable for this population, peer helping in the context of a coping skills intervention does not enhance spiritual well-being relative to coping skills alone.Item Examining the Efficacy of the Telehealth Assessment and Skill-Building Kit (TASK III) Intervention for Stroke Caregivers: Protocol for a Randomized Controlled Clinical Trial(JMIR, 2025-03-25) Bakas, Tamilyn; Miller, Elaine; Sucharew, Heidi; Kreitzer, Natalie; Israel, Jahmeel; Rota, Matthew; Harnett, Brett; Dunning, Kari; Jones, Holly; McCarthy, Michael; Brehm, Bonnie; Austin, Joan K.; Mitchell, Pamela H.; School of NursingBackground: Stroke is a leading cause of serious, long-term disability and has a sudden onset. Upon discharge to the home setting, families are thrust into providing care, often without sufficient training from health care providers. Aligned with current patient and caregiver guidelines, the Telehealth Assessment and Skill-Building Kit (TASK III) is a nurse-led intervention designed to empower caregivers to address their own needs and those of the survivor using innovative skill-building strategies. Objective: This study aims to test the short-term (immediately after the intervention at 8 wk) and long-term (12, 24, and 52 wk) efficacy of the TASK III intervention, compared with an information, support, and referral (ISR) group, to improve caregiver life changes (ie, changes in physical health, physical functioning, emotional well-being, and general health) as a result of providing care. Methods: A randomized controlled clinical trial design will be used with baseline data collection from 296 family caregivers by telephone after the stroke survivor is discharged home. Caregivers randomly assigned to the ISR group (n=148, 50%) will receive information from the American Heart Association about stroke family caregiving. Caregivers randomly assigned to the TASK III group (n=148, 50%) will receive a TASK III resource guide and information from the American Heart Association. Both groups will receive 8 weekly calls from a nurse, with a booster call a month later. Outcomes will be assessed by blinded data collectors at 8, 12, 24, and 52 weeks. The primary outcome (at 8 wk) is caregiver life changes measured by the Bakas Caregiving Outcomes Scale. Secondary outcomes are depressive symptoms; other symptoms (eg, stress, fatigue, sleep, pain, and shortness of breath); unhealthy days; diet; exercise; and self-reported health care use. Mediators are task difficulty, threat appraisal, and self-efficacy. Program evaluation outcomes (satisfaction and technology ratings) will also be analyzed. Results: The trial was registered on March 10, 2022. Enrollment and random assignment of the first participant was on November 30, 2022, with an anticipated completion of recruitment by November 30, 2025. Completion of the primary end point data analysis is anticipated by August 31, 2026, with results expected to be reported on ClinicalTrials.gov by April 1, 2027. As of October 9, 2024, a total of 198 (66.9% of the proposed total sample of 296) family caregivers have been enrolled and randomly assigned to the TASK III group (n=98, 49.5%) or the ISR group (n=100, 50.5%). The last update was performed on January 25, 2024. Conclusions: If the TASK III intervention is shown to be efficacious in the proposed randomized controlled clinical trial, our next goal will be to translate TASK III into ongoing stroke systems of care, providing a tremendous public health impact.Item Impact of acceptance and commitment therapy on physical and psychological symptoms in advanced gastrointestinal cancer patients and caregivers: Secondary results of a pilot randomized trial(Elsevier, 2023) Burns, Marcia F.; Secinti, Ekin; Johns, Shelley A.; Wu, Wei; Helft, Paul R.; Turk, Anita A.; Loehrer, Patrick J.; Sehdev, Amikar; Al-Hader, Ahmad A.; Mosher, Catherine E.; Psychology, School of SciencePatients with advanced gastrointestinal cancer often experience high symptom burden, which is associated with heightened distress in both patients and their family caregivers. Few interventions have been tested to jointly address patient and caregiver symptoms in advanced gastrointestinal cancer. In a randomized pilot trial, telephone-based, dyadic acceptance and commitment therapy (ACT) was found to be feasible in this population. The present secondary analyses examined the impact of this intervention on patient and caregiver physical and psychological symptoms. Patients and caregivers (N = 40 dyads) were recruited from clinics in Indianapolis, Indiana and randomized to either six weeks of telephone-based ACT or education/support, an attention control condition. Outcomes were assessed at baseline and at 2 weeks and 3 months post-intervention. Study group differences in outcomes were not statistically significant. However, when examining within-group change, only ACT patients experienced moderate reductions in pain severity and interference at 2 weeks post-intervention (effect size [ES]=−0.47; −0.51) as well as moderate reductions in depressive symptoms at 2 weeks (ES=−0.42) and 3 months (ES=−0.41) post-intervention. ACT caregivers experienced moderate reductions in sleep disturbance (ES=−0.56; −0.49) and cognitive concerns (ES=−0.61; −0.85) across follow-ups. Additionally, caregivers in both conditions experienced moderate reductions in fatigue (ES=−0.38 to −0.70) and anxiety (ES=−0.40 to −0.49) across follow-ups. Findings suggest that ACT may improve certain symptoms in dyads coping with advanced gastrointestinal cancer and warrant replication in a larger trial.Item Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers(JMIR, 2024-12-03) Jolliff, Anna; Holden, Richard J.; Valdez, Rupa; Coller, Ryan J.; Patel, Himalaya; Zuraw, Matthew; Linden, Anna; Ganci, Aaron; Elliott, Christian; Werner, Nicole E.; Herron School of Art and DesignBackground: Digital health interventions are a promising method for delivering timely support to underresourced family caregivers. The uptake of digital health interventions among caregivers may be improved by engaging caregivers in participatory design (PD). In recent years, there has been a shift toward conducting PD remotely, which may enable participation by previously hard-to-reach groups. However, little is known regarding how best to facilitate engagement in remote PD among family caregivers. Objective: This study aims to (1) understand the context, quality, and outcomes of family caregivers' engagement experiences in remote PD and (2) learn which aspects of the observed PD approach facilitated engagement or need to be improved. Methods: We analyzed qualitative and quantitative data from evaluation and reflection surveys and interviews completed by research and community partners (family caregivers) across 4 remote PD studies. Studies focused on building digital health interventions for family caregivers. For each study, community partners met with research partners for 4 to 5 design sessions across 6 months. After each session, partners completed an evaluation survey. In 1 of the 4 studies, research and community partners completed a reflection survey and interview. Descriptive statistics were used to summarize quantitative evaluation and reflection survey data, while reflexive thematic analysis was used to understand qualitative data. Results: In 62.9% (83/132) of evaluations across projects 1-3, participants described the session as "very effective." In 74% (28/38) of evaluations for project 4, participants described feeling "extremely satisfied" with the session. Qualitative data relating to the engagement context identified that the identities of partners, the technological context of remote PD, and partners' understanding of the project and their role all influenced engagement. Within the domain of engagement quality, relationship-building and co-learning; satisfaction with prework, design activities, time allotted, and the final prototype; and inclusivity and the distribution of influence contributed to partners' experience of engagement. Outcomes of engagement included partners feeling an ongoing interest in the project after its conclusion, gratitude for participation, and a sense of meaning and self-esteem. Conclusions: These results indicate high satisfaction with remote PD processes and few losses specific to remote PD. The results also demonstrate specific ways in which processes can be changed to improve partner engagement and outcomes. Community partners should be involved from study inception in defining the problem to be solved, the approach used, and their roles within the project. Throughout the design process, online tools may be used to check partners' satisfaction with design processes and perceptions of inclusivity and power-sharing. Emphasis should be placed on increasing the psychosocial benefits of engagement (eg, sense of community and purpose) and increasing opportunities to participate in disseminating findings and in future studies.