Waves of family hope: narratives of families in the context of pediatric chronic illness

Objective: to analyze narratives about the experience of hope of families in the context of pediatric chronic illness. Method: a narrative research using Family Systems Nursing as a conceptual framework. Three families of children and adolescents diagnosed with complex chronic illness participated in this study, totaling 10 participants. Data collection was developed using family photo-elicitation interviews. Family narratives were constructed and analyzed according to inductive thematic analysis with theoretical data triangulation. Results: the analytical theme - Waves of Family Hope in the Context of Pediatric Chronic Illness - is composed of four different types of hope: uncertain hope, caring hope, latent hope, and expectant hope. Movement through these hopes generates a driving energy and depends on a number of factors: support, information, searching for normality, and thoughts and comparisons. Conclusion: the results highlight the interaction and reciprocities of the members of the family unit, and the dynamics of hope, and illustrate the different types of hope and the factors that influence them. This study highlights the experience of hope as a family resource rather than just an individual resource, and supports health professionals in the planning of family care considering hope as an essential and dynamic family resource.

Technology-Enabled Health Care Collaboration in Pediatric Chronic Illness: Pre-Post Interventional Study for Feasibility, Acceptability, and Clinical Impact of an Electronic Health Record–Linked Platform for Patient-Clinician Partnership

Background Mobile health (mHealth) technology has the potential to support the Chronic Care Model’s vision of closed feedback loops and patient-clinician partnerships. Objective This study aims to evaluate the feasibility, acceptability, and short-term impact of an electronic health record–linked mHealth platform (Orchestra) supporting patient and clinician collaboration through real-time, bidirectional data sharing. Methods We conducted a 6-month prospective, pre-post, proof-of-concept study of Orchestra among patients and parents in the Cincinnati Children’s Hospital inflammatory bowel disease (IBD) and cystic fibrosis (CF) clinics. Participants and clinicians used Orchestra during and between visits to complete and view patient-reported outcome (PRO) measures and previsit plans. Surveys completed at baseline and at 3- and 6-month follow-up visits plus data from the platform were used to assess outcomes including PRO completion rates, weekly platform use, disease self-efficacy, and impact on care. Analyses included descriptive statistics; pre-post comparisons; Pearson correlations; and, if applicable, effect sizes. Results We enrolled 92 participants (CF: n=52 and IBD: n=40), and 73% (67/92) completed the study. Average PRO completion was 61%, and average weekly platform use was 80%. Participants reported improvement in self-efficacy from baseline to 6 months (7.90 to 8.44; P=.006). At 6 months, most participants reported that the platform was useful (36/40, 90%) and had a positive impact on their care, including improved visit quality (33/40, 83%), visit collaboration (35/40, 88%), and visit preparation (31/40, 78%). PRO completion was positively associated with multiple indicators of care impact at 3 and 6 months. Conclusions Use of an mHealth tool to support closed feedback loops through real-time data sharing and patient-clinician collaboration is feasible and shows indications of acceptability and promise as a strategy for improving pediatric chronic illness management.

Psychological Considerations in Pediatric Chronic Illness: Case Examples

Despite significant gains in survival rates for pediatric patients and adolescents/young adults (AYA) with chronic illness, patients in this vulnerable age group are also at an increased risk for developing one or more adverse effects related to their disease, treatment, or maladaptive health behaviors. Maladaptive health behaviors ultimately increase the risk for developing adverse effects, including: increased rates of morbidity and mortality, impaired physical functioning, increased fatigue, obesity, increased psychological distress, and poor quality of life. With close attention including participation in preventive and therapeutic health promotion interventions, problematic health behaviors can be mitigated and ultimately prevented over time. It is well known that improved psychological functioning and adaptive coping can result in improved health status. The present paper provides four case examples illustrating various psychological interventions in pediatric chronic illness. As evidenced in the four case examples, pediatric psychologists provide comprehensive interventions for patients with acute and chronic medical conditions through the use of health promotion interventions, adherence and self-management promotion, cognitive behavioral therapy, behavioral therapy, medical coping, parent training, and motivational interviewing. Our case series demonstrates that for the most impactful behavior change to occur, a combination of interventions is often the most effective.