Psychosocial Burden of Childhood Sickle Cell Disease on Caregivers in Kenya.

OBJECTIVES: To characterize the types and magnitude of psychosocial burden present in caregivers who have a child with sickle cell disease (SCD) in Kenya and to identify predictors of caregiver psychosocial burden, including disease severity and financial hardship. METHODS: Primary caregivers (N = 103) of children aged 1-10 years diagnosed with SCD completed surveys assessing multiple domains of caregiver quality of life (QOL), adjustment to child illness, mental health, and financial hardship. Descriptive statistics characterize psychosocial burden, and linear models assess associations. RESULTS: On indicators of QOL, caregivers report multiple difficulties across most domains, including daily activities and physical, social, cognitive, and emotional well-being. Daily activities emerged as most burdensome. On indicators of parental adjustment to chronic illness, guilt and worry emerged as the greatest concern, followed by long-term uncertainty and unresolved sorrow and anger; relative to these, they reported higher levels of emotional resources. Financial hardship was high, as caregivers reported moderate to major financial losses due to the time spent caring for their child. General linear model analyses revealed that level of financial hardship was a significant predictor of all negative psychosocial outcomes. CONCLUSIONS: Results document that Kenyan caregivers of children with SCD experience difficulties across multiple domains of functioning and that financial difficulties are likely associated with psychosocial burden. Results can guide intervention development for caregivers of children with SCD in low-resource, global contexts.

Health Care Transition for Adolescent and Young Adults with Intellectual Disability: Views from the Parents.

PURPOSE: This study explored the health care transition (HCT) experiences of parents of adolescents and young adults (AYAs) with intellectual disability (ID), 18-33 years of age, including barriers and facilitators to the AYA's transition to adulthood within and between the medical, educational, community, and vocational systems. DESIGN AND METHODS: A qualitative descriptive design with semi-structured individual interviews with 16 parent participants was used. Purposive sampling of parents was utilized with variation on race/ethnicity and AYA age, stage in transition, and condition. This study was conducted through a major medical center in the southeast United States. Content analysis was utilized. RESULTS: Three overarching themes represented the factors and essence of supporting AYAs with ID transition to adulthood. Inefficient and siloed systems illuminated barriers families are commonly experiencing within and between the medical, educational, community, and vocational systems. 'Left out here floundering' in adulthood, described the continued inadequacy of resources within each of these systems and parent's having to find available resources themselves. Hope despite uncertainty, included the perceived costs and benefits of their AYA's disability and the value of parent peer support in providing key knowledge of resources, strategies, and perspectives. CONCLUSIONS: Our findings illuminate the need for improved infrastructure to provide effective HCT and partnerships to help integrate HCT support within other life course systems. Results support the rationale for non-categorical HCT-focused approach. PRACTICE IMPLICATIONS: A parent peer coach-facilitated intervention offers promise for bridging the gap between systems and meeting family needs.

Clinical Application of a Peer Coaching Intervention to Enhance Self-Management for Adolescents and Young Adults With Inflammatory Bowel Disease.

Objective: The purpose of this article is to characterize the current evidence base related to peer support interventions for adolescents and young adults (AYAs) with inflammatory bowel disease (IBD) and to describe a peer support program to enhance self-management for AYAs with IBD through a case study. There is strong theory and compelling evidence suggesting that AYAs with IBD could benefit from and are interested in receiving peer support to enhance self-management; however, literature on peer support interventions for AYAs with IBD is lacking. Methods: This study (a) presents a topical review describing qualitative factors AYAs with IBD would seek in a peer support program as well as existing peer support programs for this population, (b) presents an innovative one-to-one peer support program targeting self-management through a case study, and (c) discusses clinical implications and directions for future research. Results: Peer support offers a promising approach for AYAs with IBD that is feasible and acceptable to patient populations. However, results from the present topical review identified only two studies that examined peer support interventions for AYAs with IBD. The case study demonstrates how a theoretically driven program uses peer support to promote self-management and adaptive behavioral change. Conclusions: The paucity of literature in this area reveals a critical opportunity for future research and clinical programming to improve existing practices by leveraging peer support. We present the application of an innovative mobile-based peer coaching intervention that has the potential to support AYAs with IBD in their self-management.

Automatic emotion and attention analysis of young children at home: a ResearchKit autism feasibility study.

Current tools for objectively measuring young children's observed behaviors are expensive, time-consuming, and require extensive training and professional administration. The lack of scalable, reliable, and validated tools impacts access to evidence-based knowledge and limits our capacity to collect population-level data in non-clinical settings. To address this gap, we developed mobile technology to collect videos of young children while they watched movies designed to elicit autism-related behaviors and then used automatic behavioral coding of these videos to quantify children's emotions and behaviors. We present results from our iPhone study Autism & Beyond, built on ResearchKit's open-source platform. The entire study-from an e-Consent process to stimuli presentation and data collection-was conducted within an iPhone-based app available in the Apple Store. Over 1 year, 1756 families with children aged 12-72 months old participated in the study, completing 5618 caregiver-reported surveys and uploading 4441 videos recorded in the child's natural settings. Usable data were collected on 87.6% of the uploaded videos. Automatic coding identified significant differences in emotion and attention by age, sex, and autism risk status. This study demonstrates the acceptability of an app-based tool to caregivers, their willingness to upload videos of their children, the feasibility of caregiver-collected data in the home, and the application of automatic behavioral encoding to quantify emotions and attention variables that are clinically meaningful and may be refined to screen children for autism and developmental disorders outside of clinical settings. This technology has the potential to transform how we screen and monitor children's development.