Challenged and changed: Quiet ego and posttraumatic growth in mothers raising children with autism spectrum disorder.

Posttraumatic growth theory posits that when life circumstances are perceived as stressful, secondary appraisal processes can be recruited in ways to facilitate both coping efforts and personal growth. Using a mixed-methods approach, we found mothers' most challenging experiences involved child behavior (e.g. aggression, communication, and social issues) and psychosocial impacts (e.g. lack of social support, perceived judgment of others, perceived loss, and personal distress). Descriptions of most rewarding experiences reflect posttraumatic growth frameworks including constructive perceptions about themselves, life, and their relationships as well as evidence for what Maercker and Zoellner call illusory types of posttraumatic growth. Quantitative data were subjected to a hierarchical regression analysis for self-reported posttraumatic growth and included mothers' demographics, child functioning, and psychosocial measures. As predicted, posttraumatic growth was positively associated with social support from mothers' most important network member and quiet ego characteristics, a type of eudaimonic motivation. Contrary to expectation, neither autism spectrum disorder-related rumination nor time since diagnosis (or their interaction) was associated with posttraumatic growth. Discussion focuses on the practical implications of our findings that posttraumatic growth-related coping includes both constructive and illusory forms and the importance of social support and eudaimonic motivation in facilitating positive forms of secondary coping.

Impact of a health information technology tool addressing information needs of caregivers of adult and pediatric hematopoietic stem cell transplantation patients.

PURPOSE: We developed BMT Roadmap, a health information technology (HIT) application on a tablet, to address caregivers' unmet needs with patient-specific information from the electronic health record. We conducted a preliminary feasibility study of BMT Roadmap in caregivers of adult and pediatric HSCT patients. The study was registered on ClinicalTrials.gov (NCT03161665; NCT02409121). METHODS: BMT Roadmap was delivered to 39 caregivers of adult and pediatric patients undergoing first-time HSCT at a single study site. We assessed person-reported outcome measures (PROMs) at baseline (hospital admission), discharge, and day 100: usefulness of BMT Roadmap (Perceived Usefulness); activation (Patient Activation Measure-Caregiver version [PAM-C]); mental health ([POMS-2®]: depression, distress, vigor, and fatigue); anxiety (State-Trait Anxiety Inventory); and quality of life (Caregiver Quality of Life Index-Cancer [CQOLC]). To identify determinants of caregiver activation and quality of life, we used linear mixed models. RESULTS: BMT Roadmap was perceived useful and activation increased from baseline to discharge (p = 0.001). Further, burden decreased through discharge (p = 0.007). Overall, a pattern of increasing vigor and decreasing depression, distress, fatigue, and anxiety was apparent from baseline to discharge. However, overall quality of life lowered at discharge after accounting for BMT Roadmap use, depression, anxiety, and fatigue (p = 0.04). CONCLUSIONS: BMT Roadmap was a feasible HIT intervention to implement in HSCT caregivers. BMT Roadmap was associated with increased activation and decreased burden, but quality of life lowered across hospitalization. Findings support the need to further develop caregiver-specific self-directed resources and provide them both inpatient and outpatient across the HSCT trajectory.

Mothers' Reactions to Their Child's ASD Diagnosis: Predictors That Discriminate Grief from Distress.

We examined whether grief and general distress reactions characterized mothers' reactions to their child's ASD diagnosis, and whether these two types of reactions had unique predictors. Hierarchical regression analyses were conducted on data collected from 362 mothers recruited from the Interactive Autism Network (IAN). The mothers were predominantly white, highly educated, and married. Grief reactions were positively associated with perceiving ASD as a loss and as unjust. Distress was positively associated with previous mental health issues, mothers' reports of their child's aggressive behavior, identity ambiguity, and less social support. Internal attributions were positively related to grief and distress. Discussion focuses on why the distinction between these two types of affective reactions may be useful for parents and professionals.

Novel Health Information Technology Tool Use by Adult Patients Undergoing Allogeneic Hematopoietic Cell Transplantation: Longitudinal Quantitative and Qualitative Patient-Reported Outcomes.

PURPOSE: Health information technology (IT) is an ideal medium to improve the delivery of patient-centered care and increase patient engagement. Health IT interventions should be designed with the end user in mind and be specific to the needs of a given population. Hematopoietic cell transplantation (HCT), commonly referred to as blood and marrow transplantation (BMT), is a prime example of a complex medical procedure where patient-caregiver-provider engagement is central to a safe and successful outcome. We have previously reported on the design and development of an HCT-specific health IT tool, BMT Roadmap. METHODS: This study highlights longitudinal quantitative and qualitative patient-reported outcomes (PROs) in 20 adult patients undergoing allogeneic HCT. Patients completed PROs at three time points (baseline, day 30 post-HTC, and day 100 post-HCT) and provided weekly qualitative data through semistructured interviews while using BMT Roadmap. RESULTS: The mean hospital stay was 23.3 days (range, 17 to 37 days), and patients had access to BMT Roadmap for a mean of 21.3 days (range, 15 to 37 days). The total time spent on BMT Roadmap ranged from 0 to 139 minutes per patient, with a mean of 55 minutes (standard deviation, 47.6 minutes). We found that patients readily engaged with the tool and completed qualitative interviews and quantitative PROs. The Patient Activation Measure, a validated measure of patient engagement, increased for patients from baseline to discharge and day 100. Activation was significantly and negatively correlated with depression and anxiety PROs at discharge, suggesting that this may be an important time point for intervention. CONCLUSION: Given the feasibility and promising results reported in this study, next steps include expanding our current health IT platform and implementing a randomized trial to assess the impact of BMT Roadmap on critical PROs.