Chavis A. Patterson

A prospective study of the role of coping and family functioning in health outcomes for adolescents with sickle cell disease.

Risk-and-resistance models identify factors that predict psychosocial adjustment to pediatric chronic illness, including sickle cell disease (SCD), but have not been applied to understand health outcomes. The study objectives were to examine prospectively the relationship of coping and family functioning with health outcomes for adolescents with SCD, accounting for sociodemographic and psychosocial risk. Forty-one adolescents and their families (41 primary caregivers, 9 second caregivers, and 15 healthy siblings) completed paper-and-pencil measures of coping and family functioning at a baseline assessment (time 1). At both time 1 and time 2 (1 y later), disease severity, SCD complications, healthcare utilization, and average hemoglobin level were derived from medical file reviews. Time 1 disease-related parenting stress predicted time 2 health outcomes; however, there were no significant associations for coping. Families concordant in reporting lower family functioning had teens with increased disease severity and greater healthcare utilization. Examination of moderation of disease-related parenting stress by a risk index showed main effects for risk and for disease-related parenting stress for time 2 disease severity and time 2 healthcare utilization. Interaction effects were not significant. Efforts to explore specific mechanisms by which adaptive family functioning contributes to health outcomes for adolescents with SCD should continue, with particular attention to addressing the potential role of multiple sociodemographic and psychosocial risk variables.

Symptoms of Depression and Anxiety in Adolescents with Sickle Cell Disease: The Role of Intrapersonal Characteristics and Stress Processing Variables

Sickle cell disease (SCD) complications place patients at risk for poor psychosocial adaptation, including depression and anxiety symptoms. This study aimed to test a mediator model based on the Risk and Resistance model to explore the role of intrapersonal characteristics and stress processing variables in psychosocial functioning. Participants were 44 adolescents with SCD, 15 healthy siblings, and 43 primary caregivers, recruited from an East Coast comprehensive sickle cell center. The participants completed paper and pencil measures of resilience factors (attributional style, hope, coping) and internalizing symptoms (depression, anxiety). Internalizing symptoms among adolescents␣with SCD and healthy siblings did not differ and were within non-clinical ranges. Self-esteem of adolescents with SCD was correlated with less depression and anxiety and sense of inadequacy was associated with poorer functioning. There were no findings to support the role of coping in psychosocial adjustment. Although the mediation hypothesis was not supported, findings highlighted the resilience of this sample of adolescents with SCD. Determining how these resilience factors protect adolescents with SCD may aid in the development of psychosocial interventions. In particular, interventions should focus on improving intrapersonal skills and coping with stress and investigate ways to tailor these interventions to African-American populations.

Recommendations for enhancing psychosocial support of NICU parents through staff education and support

Providing psychosocial support to parents whose infants are hospitalized in the neonatal intensive care unit (NICU) can improve parents’ functioning as well as their relationships with their babies. Yet, few NICUs offer staff education that teaches optimal methods of communication with parents in distress. Limited staff education in how to best provide psychosocial support to families is one factor that may render those who work in the NICU at risk for burnout, compassion fatigue and secondary traumatic stress syndrome. Staff who develop burnout may have further reduced ability to provide effective support to parents and babies. Recommendations for providing NICU staff with education and support are discussed. The goal is to deliver care that exemplifies the belief that providing psychosocial care and support to the family is equal in importance to providing medical care and developmental support to the baby.

A problem-solving intervention for children with persistent asthma: A pilot of a randomized trial at a pediatric summer camp

Background: Pediatric summer camps are emerging as a means to increase social support and improve childrens attitudes about their chronic illness. Because of the high rate of camp attendance, it may be feasible to implement interventions within that setting; however, it has yet to be determined what components of camp are beneficial. Objective: The objective of this pilot study was to determine the efficacy of a problem-solving intervention targeting disease management in improving psychosocial functioning of children with persistent asthma, over and above the benefits of participation in a pediatric summer camp. Methods: Fifty campers were randomly assigned to receive camp plus a nightly problem-solving intervention activity or camp as usual. Changes in self-reported asthma knowledge and problem-solving skills and self- and parent-reported child self- and social competence health-related quality of life were assessed thrice: before camp, on the last day of camp, and 3-months post-camp. Results: There were no significant differences between the problem-solving intervention group and the camp as usual group in change across psychosocial variables from before camp to last day of camp or before camp to 3-months post-camp. Increases in asthma knowledge and problem-solving were found 3-months post-camp when groups were combined. Conclusions: Although support was found for improvements in disease knowledge and problem-solving skills after camp participation, there were no identified benefits to the problem-solving intervention. Children with asthma who participated in camp were functioning at a high level in terms of knowledge, problem-solving, and social and self-competence, suggesting that interventions may be more effective if targeted to patients with identified problems with disease management.

Recommendations for mental health professionals in the NICU

This article describes recommended activities of social workers, psychologists and psychiatric staff within the neonatal intensive care unit (NICU). NICU mental health professionals (NMHPs) should interact with all NICU parents in providing emotional support, screening, education, psychotherapy and teleservices for families. NMHPs should also offer educational and emotional support for the NICU health-care staff. NMHPs should function at all levels of layered care delivered to NICU parents. Methods of screening for emotional distress are described, as well as evidence for the benefits of peer-to-peer support and psychotherapy delivered in the NICU. In the ideal NICU, care for the emotional and educational needs of NICU parents are outcomes equal in importance to the health and development of their babies. Whenever possible, NMHPs should be involved with parents from the antepartum period through after discharge.

Mistrust of Pediatric Sickle Cell Disease Clinical Trials Research

INTRODUCTION Sickle cell disease (SCD) research is hampered by disparities in participation due in part to mistrust of research among racial/ethnic minorities. Beyond the historic context of research misconduct, little is known about the associations of social ecologic factors with mistrust and of mistrust with SCD clinical trials enrollment. This study evaluated proximal (age, gender, disease severity, perceived stress, SES) and distal (religious beliefs, social support, instrumental support) factors related to mistrust of research among caregivers of children with SCD and adolescents and young adults (AYAs) with SCD. METHODS Over an 18-month period (2009-2010), participants completed questionnaires of perceived barriers and benefits to clinical trials enrollment, perceived stress, and self-reported demographic and disease-related information. Analyses (January-June 2015) used multivariable linear regressions to evaluate predictors of mistrust. RESULTS Data were analyzed for 154 caregivers (mean age, 38.75 years; SD=9.56 years; 90.30% female) and 88 AYAs (mean age, 24.76 years; SD=7.25 years; 46.40% female). Among caregivers (full model, R(2)=0.14, p≤0.001), greater mistrust was explained by higher perceived stress (β=0.04, p=0.052); religious beliefs (β=0.61, p≤0.001); and greater instrumental support (β=0.07, p=0.044). Among AYAs (full model, R(2)=0.18, p≤0.001), higher mistrust was explained by being male (β=-0.56, p≤0.001) and lower instrumental support (β=-0.11, p=0.016). Mistrust was significantly greater among caregivers that reported no prior involvement in medical research (p=0.003). CONCLUSIONS By understanding the complexity through which social ecologic factors contribute to mistrust, researchers may create targeted strategies to address mistrust and increase engagement in SCD research for caregivers and AYAs.

Giving Voice to the Psychological in the NICU: A Relational Model

Abstract Despite evidence indicating high rates of distress among parents with infants in neonatal intensive care, few neonatal intensive care units (NICU) have psychologists on staff. Recently, the National Perinatal Association (NPA) has recommended that all NICUs staff psychologists dedicated to supporting families and medical providers. This article presents a three-part model of NICU psychological interventions that is relationship-based and context attentive, including: (1) the maternal/paternal experience, (2) transition to home, and (3) work with staff. The narrative descriptions are grounded in case vignettes, and supported by the literature as well as survey research obtained from a nation-wide sample of psychologists (n = 20) currently working in a NICU setting. Combined, a significant number of behavioral objectives are identified, and explored through the lens of ethical care and treatment in a NICU setting.

Family Functioning, Medical Self-Management, and Health Outcomes Among School-Aged Children With Sickle Cell Disease: A Mediation Model

Background Informed by the Pediatric Self-Management Model, the present study tested relationships between parent and family functioning, sickle cell disease (SCD) self-management, and health outcomes for children with SCD. Method 83 children with SCD and a parent completed baseline data as part of a larger investigation of a family-based, problem-solving intervention for children with SCD (M age = 8.47). Youth and parents completed a measure of child health-related quality of life (HRQOL), and parents completed measures of family efficacy, parenting stress, and SCD self-management. SCD pain episodes and urgent health utilization information over the past year were obtained via medical chart review. Results SCD self-management mediated the relationship between parent-reported family efficacy and parent proxy HRQOL, as well as the relationship between parenting stress and child and parent proxy HRQOL. Mediation models were nonsignificant for outcomes beyond HRQOL, including SCD pain episodes and urgent health utilization. Conclusion Fostering family efficacy and reducing parenting stress may be meaningful intervention targets for improving SCD self-management and child HRQOL among school-aged children. Although findings were consistent with the Pediatric Self-Management Model in terms of HRQOL, the model was not supported for pain episodes or urgent health utilization, highlighting the need for multi-method, longitudinal research on the SCD self-management behaviors that are linked to preventable health outcomes.

Acceptability of In Utero Hematopoietic Cell Transplantation for Sickle Cell Disease

Background. In utero hematopoietic cell transplantation (IUHCT) has curative potential for sickle cell disease (SCD) but carries a risk of fetal demise. Methods. We assessed the conditions under which parents of children with SCD and young adults with SCD would consider IUHCT in a future pregnancy, given a 5% fixed risk of fetal demise. Participants were randomized to consider a hypothetical cure rate (20%, 40%, or 70%). Subsequently, cure rate was either increased or decreased depending on the previous answer to reveal the lowest acceptable rate. Participants also completed the Pediatric Research Participation Questionnaire (PRPQ) and an omission scale. Results. Overall, 74 of 79 (94%) participants were willing to consider IUHCT, and 52 (66%) participants accepted IUHCT at a cure rate of 40%, the estimated rate of therapeutic mixed chimerism. Participants with higher scores on the PRPQ perceived benefits scale were more likely to participate at lower cure rates (OR 1.08, p=0.007) and participants with a greater degree of omission bias were less likely to participate at lower cure rates (OR 0.83, p=0.04). Demographics and SCD severity were not significantly associated with acceptability of IUHCT. Conclusion. This study suggests that the majority of parents >and young adults would consider IUHCT under expected therapeutic conditions.

Training Pediatric Psychologists for Perinatal Behavioral Health Services in a Pediatric Hospital

Although pediatric hospitals specialize in providing care to children and adolescents, at The Children’s Hospital of Philadelphia (CHOP), our team has been providing behavioral health services for two unique parent populations—parents with a child in the Newborn Infant Intensive Care Unit and pregnant women carrying fetuses with specific birth defects and receiving prenatal care in the Center for Fetal Diagnosis and Treatment. A new training program was developed to expand the scope of pediatric psychologists’ practice to include perinatal behavioral health services, specifically for these two unique parent populations served at CHOP. The program includes direct service provision for adult mental health concerns, as well as education and support to help families cope with the existing medical conditions. This article describes the training program and its implementation as a model of training for other pediatric hospitals. The roles of psychologists embedded in these units and hospital privileges are discussed.