The link between executive function, socio-emotional functioning and health-related quality of life in children and adolescents with mild to moderate chronic kidney disease.

BACKGROUND: Children and adolescents with mild to moderate chronic kidney disease (CKD) are at high risk for mild but persistent impairment in executive functions, which have been associated with low health-related quality of life (HRQOL) among children and adolescents with chronic health conditions. However, no similar link has been established among children and adolescents with mild to moderate CKD. Given the essential role executive functions play in the development of adequate cognitive, emotional and social skills, it is essential to gain a clearer understating of the magnitude and attributes of executive functions and its link to HRQOL in order to inform appropriate medical and educational interventions for this patient population. OBJECTIVE: The aim of this study is to examine the relationship between executive functions, socio-emotional functioning and HRQOL in children and adolescents with mild to moderate CKD. METHODS: A cross-sectional design was used for this secondary data analysis of 199 children and adolescents (ages 6-17) with mild to moderate CKD from the United States and Canada who receive care at hospitals associated with the Chronic Kidney Disease in Children Study (CKiD). RESULTS: The presence of impairment in executive functions and socio-emotional functioning (internalizing problems) significantly predicted lower HRQOL after controlling for key covariates (i.e., maternal education, anaemia and hypertension). Further, internalizing problems partially mediated the relationship between executive functions and HRQOL such that impairment in executive functions predicted lower HRQOL directly and indirectly by contributing to higher internalizing problems, which further contributed to low HRQOL. CONCLUSION: This study underscores the importance of executive functions and socio-emotional functioning in the manifestation of HRQOL. Given that HRQOL is potentially compromised for many children and adolescents with mild to moderate CKD, it will be important for both clinicians and researchers to examine a range of factors, including executive functions and socio-emotional functioning, in order to optimize HRQOL.

Financial stress in emerging adults with type 1 diabetes in the United States.

OBJECTIVE: To describe the relationships among financial stress factors (perceived stress, financial stress, and financial independence) and psychological factors (depressive symptoms, trait anxiety, and diabetes distress) on self-management outcomes (HbA1c and diabetes-related quality of life) in emerging adults with type 1 diabetes. RESEARCH DESIGN AND METHODS: A descriptive, correlational, cross-sectional study examined 413 emerging adults, ages 18-25, from the Type 1 Diabetes Exchange Clinic Registry. Data were collected via REDCap surveys using the Personal Financial Well-Being Scale, Willingness to Pay Scale, Financial Independence Visual Analog Scale, Center for Epidemiological Studies-Depression Inventory, State-Trait Anxiety Inventory, The Type 1 Diabetes Distress Scale, and Diabetes Quality of Life Measure. Hierarchical Multiple Regression analyses explored significant barriers to self-management outcomes. RESULTS: Hierarchical Multiple Regression analyses revealed that 20.6% of variance in HbA1c (F = 15.555, p < 0.001) was explained by greater financial stress (ß = -0.197, p < 0.001), willingness to pay (ß = -0.220, p < 0.001), disease duration (ß = 0.119, p = 0.014), and diabetes distress (ß = 0.181, p < 0.001); 64.5% of the variance in diabetes-related quality of life (F = 148.469, p < 0.001) was significantly explained by greater financial stress (ß = -0.112, p = 0.002), diabetes distress (ß = 0.512, p < 0.001), trait anxiety (ß = 0.183, p = 0.001) and depressive symptoms (ß = 0.162, p = 0.001). CONCLUSIONS: Greater financial stress and psychological factors have detrimental impacts on self-management outcomes during emerging adulthood. Diabetes providers need to identify and address these factors in routine care and advocate for policy changes to support improved self-management outcomes.

Theoretical and Operational Consideration of Mindfulness, Resilience, and Resourcefulness.

Mindfulness, resilience, and resourcefulness are theoretically distinct but related constructs critical for improving psychosocial well-being outcomes for informal caregivers and others. Our aims were to evaluate the theoretical and operational distinctions among these constructs. Measures of mindfulness (Decentering Scale), resilience (Connor-Davidson Scale) and resourcefulness (Resourcefulness Scale) were collected from a national sample of 348 grandmother caregivers. We conducted exploratory factor analysis and examined correlation patterns. Inter-correlations ranged from r= .26 (resourcefulness and resilience) to r= .73 (resilience and mindfulness). Factor analyses and scree plots indicated unidimensional factors for resilience and for mindfulness, and two factors for resourcefulness (personal and social). When items from all measures were analyzed together, the four factors remained. Distinct relationships were found between mindfulness, resilience, and resourcefulness with relevant external variables. Our results support the conceptual distinctions among the constructs, providing support for interventions targeting these constructs to improve psychosocial outcomes in caregivers.

Knowledge, Beliefs, and Behaviors Related to Palliative Care Delivery Among Pediatric Oncology Health Care Providers.

The care of pediatric patients with cancer and their families is complex and rapidly evolving. Despite significant advances in outcomes, symptoms of the disease and complications of therapy continue to cause suffering that may improve with the involvement of pediatric palliative care (PPC) services. This descriptive study responds to the observation of great variability in PPC utilization within pediatric oncology. Data collected from 156 health care professionals (nurses, advanced practice professionals, and physicians) from a statewide hematology alliance evaluates the knowledge, beliefs, and perceived barriers to PPC involvement. Data analysis reveals significant variability when comparing respondents from professional roles and practice environments. Despite progress in PPC availability, care delivery remains incongruent with current recommendations. Knowledge gained from this study emphasizes the important role for all health care providers in advocating for support of PPC programs, educating the public, and committing to intentional involvement of PPC services while caring for pediatric oncology patients.

Grandchildren's Depressive Symptoms and Perceptions of Family Functioning: Protective and Influencing Factors.

A recent increase in children living with grandparents places more children at increased risk for emotional, psychological, or behavioral problems. This study used the Resiliency Model of Family Stress, Adjustment, and Adaptation to examine how children's living situation, parental monitoring, child's resourcefulness, and perceived support affect depressive symptoms and perceived family functioning. Of participants, 36% ( n = 56) lived with their parents only, 44% ( n = 69) lived with a grandmother as their primary caregiver, and 20% ( n = 31) lived in a multigenerational household. Results indicate parental monitoring and support affected perceptions of family functioning. Subjective support and resourcefulness affected depressive symptoms. No effects were found from living situation and demographic factors. Resourcefulness had the strongest effect on depressive symptoms, with a 3-point decrease in symptoms for each incremental increase in resourcefulness. This study provides insight into factors influencing children's depressive symptoms and perceived family functioning, and provides direction for the development of future interventions.

Evaluating an Online Resourcefulness Training Intervention Pilot Test Using Six Critical Parameters.

Few resources are available to help grandmother caregivers to grandchildren manage their complex family situations that may have immediate and long-term consequences for themselves and their families. Resourcefulness training is an intervention designed to help grandmothers improve their ability to deal with these problems. The purpose of this pilot study was to evaluate the necessity, feasibility, acceptability, fidelity, safety, and effectiveness (i.e., effect sizes) of an online, computer-based resourcefulness training intervention that was adapted from a face-to-face intervention. Twelve grandmothers raising or living with grandchildren participated in the pilot intervention that included (a) watching an instructional video on resourcefulness, (b) completing two online questionnaires over a 6-week time period, and (c) writing in an online journal every day for 4 weeks. Data are evaluated within the context of the six parameters important to intervention development. Qualitative and quantitative results provide initial support for all six parameters. Recommendations to improve aspects of the intervention are discussed.