Mental Health Experiences of Adolescents and Young Adults with Inflammatory Bowel Disease During Transition to Adult Care: A Qualitative Descriptive Study.

OBJECTIVE: To explore the mental health experiences of adolescents and young adults (AYA) with inflammatory bowel disease (IBD) enrolled in a randomized controlled trial evaluating the impact of a multimodal transition intervention. STUDY DESIGN: Virtual semistructured interviews were held with 21 AYA aged 16 through 18 years with IBD. Guided by qualitative description, interviews were digitally recorded, transcribed verbatim, and analyzed using an inductive approach to reflexive thematic analysis. RESULTS: Three themes were generated from the data: (1) a continuum of integration between IBD and personal identity in adolescence and young adulthood; (2) manifestations of the mind-gut connection among AYA with IBD; and (3) hopes and priorities for addressing mental health in IBD care. CONCLUSIONS: AYA with IBD endorsed the criticality of incorporating mental health discussions into routine care during the transition to adult care, given the co-occurrence of psychosocial stressors throughout this period. A series of factors promoting and hindering the integration of IBD into one's identity were identified and could be explored in clinical encounters.

Multimodal intervention to improve the transition of patients with inflammatory bowel disease from pediatric to adult care: protocol for a randomized controlled trial.

BACKGROUND: Transition in care is defined as the "purposeful and planned movement of adolescents and young adults with a chronic medical condition from pediatric to adult-oriented healthcare systems/care providers." Currently, there are no Level 1 evidence-based interventions to improve the care of transitioning adolescents and young adults (AYAs) with inflammatory bowel disease (IBD). The development of a transition program using a biopsychosocial approach will improve the standards for healthcare delivery to transitioning IBD patients. This is a protocol for a structured randomized controlled trial (RCT) to assess the clinical and implementation effectiveness of a multimodal intervention focused on improving patient function, transition readiness and outcomes among AYA patients with IBD being cared for at pediatric centers in Canada. METHODS: This multi-center RCT is a type 1 hybrid effectiveness-implementation trial to evaluate effectiveness of the intervention and how it can be implemented more widely after the trial. We will include patients aged 16.0-17.5 years. The intervention program consists of 4 core components: (1) individualized assessment, (2) transition navigator, (3) virtual patient skills-building with a focus on building resilience, self-management and self-efficacy, and (4) a virtual structured education program. The control group will undergo standard-of-care defined by each participating center. The primary outcome will be the IBD Disability Index, a validated measure to assess patient functioning. Secondary outcomes include transition readiness and success, anxiety and depression scales, and health service utilization rates. Additionally, we will measure implementation outcomes and related barriers and facilitators for the intervention program. DISCUSSION: The type 1 hybrid effectiveness-implementation design will allow for the development of a feasible, sustainable, and acceptable final intervention model. The intervention will consist of modules that can be accessed in an online, virtual platform. The implementation will allow centralization of interventions and funding in order to minimize the impact on local clinical practice or hospital resources. The authors anticipate that the main study limitation will relate to study subjects not completely adhering to every component of the intervention, which will be evaluated and addressed using the implementation science approach. TRIAL REGISTRATION: NCT05221281. Registry: ClinicalTrials.gov. Date of registration: February 2, 2022. https://clinicaltrials.gov/ct2/show/NCT05221281 .

Sources of Caregiving Burden in Middle-Aged and Older Latino Caregivers.

OBJECTIVE: We aimed to identify sources of caregiver burden in middle-aged and older Latino caregivers of people with Alzheimer disease and related dementia (ADRD). METHODS: Participants were recruited through an agreement with the Rush Alzheimer's Disease Center Clinic Data Repository. We conducted semistructured interviews with 16 middle-aged and older Latinos who were the primary caregiver for a family member diagnosed with ADRD. The interview guide consisted of questions and probes to capture participants' perceptions of family caregiving. Direct content analysis was performed. RESULTS: Participants were aged 50 to 75 years (n = 16) and a majority female (n = 12). The sources of burden identified were (1) caregiver responsibilities, (2) caregiving-related health decline, (3) lack of support, (4) financial status, (5) vigilance, and (6) concerns about the future. CONCLUSIONS: The influence of gender roles seemed to play a role in caregivers' perceptions of sources of burden, especially on caregiver responsibilities and perceptions of lack of support. Latinos cultural values such as familismo and marianismo likely reinforced gender disparities in family caregiving.

Isotemporal Substitution of Sedentary Time With Physical Activity Among Middle-Aged and Older Latinos: Effects on Episodic Memory.

PURPOSE: To examine the estimated effects of substituting 30 min of sedentary time with low-light physical activity (LLPA) and high-light physical activity (HLPA) on episodic memory, executive functioning, and working memory among middle-aged and older Latinos. DESIGN: A cross-sectional study. SETTING: Chicago and Chicagoland suburbs. SUBJECTS: Middle-aged and older Latinos (n = 61). MEASURES: Accelerometer-assessed physical activity. A cognitive battery was administered to assess episodic memory, executive function, and working memory. ANALYSIS: Isotemporal substitution analyses were conducted, where unstandardized coefficients from linear regression models were used to examine the substitution effect of replacing sedentary time with LLPA and HLPA. RESULTS: Substitution of sedentary time with LLPA was associated with better episodic memory (Immediate recall, B = .947, P = .008; Delayed recall, B = .857, P = .013). No other significant substitution effects were present. CONCLUSION: Middle-aged and older Latinos who replace sedentary time with LLPA may have better episodic memory. Future studies may target light physical activity to address cognition disparities and can inform the development of physical activity interventions that are appealing and accessible for Latinos.

Self-rated health as a predictor of cognition among middle-aged and older Latinos.

Self-rated health (SRH) has been used to predict cognitive decline in various populations; however, this relationship has not been examined in Latinos. This study examines the relationship between SRH and cognition among middle-aged and older Latinos. A cross-sectional analysis was conducted among Latinos (n = 425, Mage = 64.13 ± 7.65, 82% female). Participants rated their health as poor/fair, good, and excellent and completed cognitive performance tests. Analyses of covariance (ANCOVA) examined differences in cognition between SRH categories. ANCOVAs showed significant differences in SRH categories for working memory (F [2, 357] = 3.63, p = .028) and global cognition (F [2, 348] = 3.074, p = .047), such that those who self-rated their health as good had better scores compared to participants in the poor/fair category. Findings show that SRH is associated with cognition among middle-aged and older Latinos. SRH may serve as an indicator of early signs of cognitive decline.

The effects of the BAILAMOS Dance Program on hippocampal volume in older Latinos: a randomized controlled pilot study.

Hippocampal atrophy is associated with cognitive decline. Physical activity (PA) can reverse the hippocampal loss. This study investigated the effects of the 4 month BAILAMOS dance program on hippocampal volume and self-reported PA in Latinos. Participants were randomized to the BAILAMOS dance program or waitlist control group (N = 14, n = 10 intervention, n = 4 waitlist, 67 ± 6.1 years old, 70% female). Hippocampal volumes were derived from Magnetic Resonance Imaging whole-brain T1-weighted images. Participants self-reported PA through the Community Healthy Activities Model Program for Seniors Physical Activity Questionnaire for older adults. There were no statistically significant changes in hippocampal volume preintervention to postintervention (F[1, 8] = .077, p = .79, d = .05) and no associations between PA change and hippocampal volume (F[4, 13] = .71, p = .61). However, dance participants self-reported more PA (d = .54) compared to the control. These findings demonstrate that the BAILAMOS dance program did not decrease hippocampal atrophy; however, it increased self-reported PA. Future studies should include longer and more cognitively demanding interventions to determine whether dance can reduce cognitive decline through hippocampal changes.