Browsing by Author "Bonner, Melanie J"

Children and adolescents with sickle cell disease (SCD) are at high risk for medical complications, neuropsychological sequelae, and lower overall quality of life. One target of intervention that can positively impact these outcomes is treatment adherence. Despite the known benefits of treatment adherence for health outcomes, children with SCD encounter several barriers that result in low overall levels of adherence and reduction of treatment benefits. Furthermore, little is known regarding the relationship between adherence and quality of life for this pediatric population. As such, two studies were conducted in order to (a) examine the relationship between treatment adherence and quality of life among youth with SCD, and (b) examine the feasibility, acceptability, and preliminary efficacy of a novel mobile health intervention to improve adherence among youth with SCD. For the first study, 46 children and adolescents with SCD and a caregiver were recruited. Results indicated that participants with good adherence had significantly higher parent-reported quality of life than participants with poor adherence. In contrast, based on child self-report, participants did not differ across quality of life domains. Subsequently, 43 participants were recruited to participate in the pilot intervention study, the Intensive Training Program (ITP). The intervention was conducted in two phases: Phase I recruited participants receiving iron chelation therapy to reduce the risk of iron overload associated with chronic red blood transfusions (n=11); Phase II broadened the scope of participants to those prescribed hydroxyurea (HU; n=32), a once daily oral medication. Results indicated that patients and their caregivers endorsed high levels of acceptance, ease of use, and satisfaction with mobile health technology. In addition, participants encountered several technological issues that limited access and resulted in poor compliance with the ITP for some participants early on in the study. Despite this, participants demonstrated significant increases in medication possession ratio (MPR) based on pharmacy refill as well as sustained improvements in disease knowledge. Adherent participants demonstrated significant decreases in outcomes related to caregiver burden as well as significantly lower pain impact when compared to non-adherent youth. In addition, children who were adherent reported quality of life and overall SCD-related functioning at a clinically-significant higher level when compared to those who were non-adherent. Implications for future research and application to clinical care are discussed.

Peer support is one theoretically grounded and developmentally informed approach to support the unique psychosocial challenges faced by adolescents and young adults (AYAs) living with childhood onset chronic conditions (COCCs). Working alliance is presented as one well-established construct to understand the underlying mechanisms of peer support in this population. This exploratory study sought to describe the working alliance trajectory in a peer support intervention for AYAs with a COCC.

The present study was a substudy of a randomized controlled trial examining the efficacy of a one-to-one telephone-based peer coaching intervention for AYAs with a COCC designed to promote self-management and patient activation. The present study aimed to describe the working alliance trajectory from the perspective of the AYA over the first four coaching sessions and to examine AYA, peer coach, and dyadic characteristics (gender, age, race, COCC category) that influence the working alliance trajectory. This study also utilized qualitative analyses to describe core aspects of the AYA-peer coach relationship over time. AYAs completed a self-report measure to assess their perceived working alliance following the first four peer coaching sessions. For 32 AYA-peer coach dyads, linear random coefficient regression models for longitudinal data were conducted to describe the trajectory of overall working alliance across the first four coaching sessions. AYAs perceived a strong working alliance in the first peer coaching session, which was maintained across three subsequent sessions. There were no significant differences in working alliance trajectory across AYA, peer coach, and dyadic characteristics. Although not significantly significant, a trend emerged in which AYAs and peer coaches with the same COCC had a decrease in working alliance over time, while AYAs and peer coaches with a different COCC had an increase in working alliance over time. Qualitative findings revealed themes describing peer coach skills consistent with the working alliance construct (warmth/empathy/genuineness, alignment with AYA’s goals) as well as the ability to integrate similar experiences to build a trusting relationship and provide support, which may be unique to the peer relationship. Findings from the present study serve as a foundation for future efforts to capture the underlying mechanisms of peer support for AYAs with a COCC, which can inform the design of research and clinical programming that effectively leverage peer support to promote outcomes.

Caregivers of survivors of pediatric cancer face ongoing social, emotional and financial challenges that may result in enduring illness- and caregiving-related distress. After patients complete treatment there are challenges that persist. Indeed, emerging physical and cognitive "late effects," resulting from the disease and treatment, require families to adapt to a new normal state that may require significant long-term follow-up and care by the survivor and their primary caregiver. This study compares the psychological adjustment of caregivers of pediatric cancer survivors with caregivers of healthy children. In addition, this study evaluates individual factors, such as family functioning and coping style, which may be associated with poorer adjustment among caregivers of pediatric cancer survivors. Caregivers of pediatric cancer survivors (n = 64) and caregivers of healthy children (n = 64) were recruited during regularly scheduled clinic visits to complete questionnaires including a demographic and illness questionnaire and measures of psychosocial functioning. A series of multivariate analyses of covariance were conducted to assess for differences in caregiver distress by group. Caregivers of survivors reported significantly more child-specific parenting stress and somatization than caregivers of healthy children. Hierarchical regression modeling revealed that Escape-avoidance coping and Supportive family functioning predicted 25-40% of the variance in parenting-related psychological adjustment among caregivers of survivors. Caregivers of pediatric cancer survivors face unique challenges that contribute to ongoing distress, particularly related to the parenting role. This population may benefit from interventions aimed at reducing avoidance based coping and improving family functioning.

Children with sickle cell disease (SCD) have a high risk of neurocognitive impairment. No known research, however, has examined the impact of neurocognitive functioning on quality of life in this pediatric population. In addition, limited research has examined neurocognitive interventions for these children. In light of these gaps, two studies were undertaken to (a) examine the relationship between cognitive functioning and quality of life in a sample of children with SCD and (b) investigate the feasibility and preliminary efficacy of a computerized working memory training program in this population. Forty-five youth (ages 8-16) with SCD and a caregiver were recruited for the first study. Participants completed measures of cognitive ability, quality of life, and psychosocial functioning. Results indicated that cognitive ability significantly predicted child- and parent-reported quality of life among youth with SCD. In turn, a randomized-controlled trial of a computerized working memory program was undertaken. Eighteen youth with SCD and a caregiver enrolled in this study, and were randomized to a waitlist control or the working memory training condition. Data pertaining to cognitive functioning, psychosocial functioning, and disease characteristics were obtained from participants. The results of this study indicated a high degree of acceptance for this intervention but poor feasibility in practice. Factors related to feasibility were identified. Implications and future directions are discussed.

Many survivors of pediatric brain tumors and leukemia will experience cognitive, academic, and social difficulties that will significantly impact their quality of life. Of these, the least is known about the nature and range of survivors' social difficulties. Using a model developed for children with traumatic brain injury, the objective of the current study was to evaluate the neurocognitive and social-cognitive skills that may determine social outcomes in survivors of pediatric brain tumors and leukemia. A sample of survivors of childhood cancer aged 8 to 16 (n = 19) was compared to two control groups - children with ADHD (n = 10) and typically-developing children (n = 41) - on measures of neurocognitive skills, social-cognitive skills, and social experience. Results revealed that survivors demonstrated significant deficits in all domains as compared to typically-developing children. Evaluation of the model revealed that neurocognitive and social-cognitive skills were significant predictors of social experience. More specifically, attention problems and facial expression recognition were significant individual predictors. Survivors of pediatric cancer may experience deficits in social functioning that will impact their quality of life. Further assessment of the skills that influence social outcomes will be particularly important as a means for developing evidence-based interventions.

Understanding mechanisms underlying self-injurious thoughts and behaviors (SITBs) among youth is crucial for the development of targeted intervention and preventions strategies. Neurocognitive and neurobiological processes, such as cognitive inflexibility and physical pain processing, leading to engagement in these behaviors have been understudied. Two studies were conducted in order to (a) examine whether cognitive inflexibility mediates changes in suicidal ideation following discharge from psychiatric hospitalization among acutely suicidal adolescents and (b) investigate the relationship between cognitive inflexibility and social and physical pain processing among young adults at high- and low-risk for SITBs. For the first study, 229 adolescents were recruited from an adolescent inpatient unit with current suicidal ideation. Results indicated decreases in suicidal ideation and cognitive inflexibility over the 12-months following discharge from psychiatric hospitalization; however, changes in cognitive inflexibility over time were not shown to mediate decreases in suicidal ideation. A pilot study was also conducted (n = 36) to examine changes in physical pain processing following social exclusion for young adults at high-risk for SITBs by virtue of their lifetime histories of SITBs compared to those at low-risk for SITBs. Limited evidence was found indicating changes in physical pain processing following social exclusion for either group. However, the pattern of relationships between cognitive inflexibility and physical pain processing appeared different depending on risk group. Specifically, for participants at low risk for SITBs, greater cognitive inflexibility was related to increased pain threshold, whereas for participants at high risk for SITBs, greater cognitive inflexibility was associated with lower pain tolerance. Directions for future research and implications of study results are discussed.