Background: Integration of nonpharmacological therapies, such as cognitive and behavioral pain management strategies, is recommended to support comprehensive disease and pain management among children and adolescents with sickle cell disease (SCD). The Comfort Ability Program for Sickle Cell Pain (CAP for SCP) introduces psychological and biobehavioral pain management strategies to children and adolescents with SCD. This study aimed to pilot the implementation of the CAP for SCP in a group setting to children and adolescents hospitalized for SCD pain examining feasibility, acceptability, and preliminary effectiveness on improving pain knowledge and coping efficacy. Method: Adaptation of CAP for SCP into a three-session group format was guided by four phases of the Dynamic Adaptation Process model: Exploration, Preparation, Implementation, and Sustainment. Youth with SCD (n = 57) hospitalized for pain participated in at least one session and completed self-report of knowledge of pain management skills, pain coping efficacy, and treatment acceptance. Completion rates of sessions and qualitative feedback were gathered to evaluate feasibility and acceptability. Results: Feasibility of conducting inpatient group sessions was suboptimal; however, patients and medical providers reported moderate to high levels of treatment acceptance. Patients also reported significant improvements in knowledge of pain management skills following session 1. Conclusions: CAP for SCP is a patient-centered first-line psychoeducational intervention that can be integrated into clinical practice settings to introduce youth to cognitive and behavioral pain management strategies to support SCD pain management.

The current study examined whether cognitive and social processing variables mediated the relationship between fear network and depression among parents of children undergoing hematopoietic stem cell transplant (HSCT). Parents whose children were initiating HSCT (N = 179) completed survey measures including fear network, Beck Depression Inventory, cognitive processing variables (positive reappraisal and self-blame) and social processing variables (emotional support and holding back from sharing concerns). Fear network was positively correlated with depression (p < .001). Self-blame and holding back emerged as individual partial mediators in the relationship between fear network and depression. Together they accounted for 34.3 % of the variance in the relationship between fear network and depression. Positive reappraisal and emotional support did not have significant mediating effects. Social and cognitive processes, specifically self-blame and holding back from sharing concerns, play a negative role in parents' psychological adaptation to fears surrounding a child's HSCT.

Purpose: This substudy of an intervention trial aimed to describe barriers to participation in psychological care among primary caregivers of children who were about to undergo a hematopoietic stem cell transplantation (HSCT), including demographic and medical correlates. Method: Three hundred and twelve primary caregivers of children undergoing HSCT who were approached to participate in a psychological intervention trial (n = 218 enrollees and 94 decliners) completed a measure of barriers to psychological care. Results: The most frequently endorsed barriers to care were focusing on the child as priority, not wanting to leave the child’s bedside, and already having adequate psychosocial support. The least frequently endorsed barriers were location, wait times, and stigma around seeking psychological care. Conclusions: Results suggest that explaining how psychological care for a primary caregiver can positively affect their ill child may reduce barriers to seeking needed support services. Certain practical barriers to care may be irrelevant in inpatient settings where psychological support is offered.

The current cross-sectional, single-center study aimed to examine sleep quality in a sample of adolescents awaiting solid organ transplantation and to explore associations between sleep quality and both health-related quality of life and barriers to adherence. Thirty adolescents between the ages of 12 and 18 years (M age = 15.26, SD = 1.89) who were awaiting transplantation participated in this study. Participants completed measures of sleep quality, health-related quality of life, and barriers to adherence. T test and correlational analyses were performed to examine study aims. Adolescents awaiting transplantation had significantly lower levels of overall sleep quality compared to published norms of healthy peers. Domains of sleep quality were positively related to emotional and psychosocial health-related quality of life. Sleep quality domains were also negatively related to adherence barriers. This study provides preliminary evidence demonstrating that sleep quality among transplant candidates is compromised, and that poor sleep quality is related to adolescents’ functioning across a number of domains during the pretransplant period. Results highlight the clinical importance of assessing and targeting sleep functioning in adolescents awaiting transplantation in order to reduce the negative influence of suboptimal sleep on functioning during this vulnerable period.