A Systematic Review of Relationships Between Illness Identity and Health-Related Outcomes in Individuals with Chronic Illnesses.

The aim of the current systematic review is to examine relationships among illness identity and illness-specific variables, adherence, and health-related outcomes. Studies were included if they (a) presented quantitative data on illness identity's relationship with adherence or health-related outcomes, (b) included chronic medical illness samples, (c) were peer-reviewed, and (d) were available in English. PubMed and EBSCOhost were searched. Quality was evaluated using the EPHPP Tool. Twelve papers were included. Moderate evidence supports the relationship between engulfment, enrichment, and illness complexity. Moderate evidence supports relationships between multiple identities and adherence as well as with various health-related outcomes. There is somewhat consistent evidence for associations between engulfment and negative health-related outcomes. It may be important to inform healthcare providers of possible identity challenges that patients face and their associations with adherence and health-related outcomes. Routine illness identity screening may allow for identification of individuals who would benefit from increased support.

Sleep Problems in Pediatric Disorders of Gut-Brain Interaction: A Systematic Review.

OBJECTIVE: Disorders of gut-brain interaction (DGBIs) are common, and findings are mixed on rates of sleep problems (e.g., sleep quality) in pediatric populations. A clear understanding of sleep problems in pediatric DGBIs is needed as sleep challenges might negatively impact symptoms and prognoses. The aims of this systematic review are to (1) describe the prevalence and types of sleep problems in pediatric patients with DGBIs and examine differences by DGBI diagnosis and (2) examine the relationship among sleep problems and pain, mood, and functional outcomes in pediatric patients with DGBIs. METHODS: We searched PubMed, PsycInfo, CINAHL, and Medline in June 2022; articles were included if they enrolled ≤19 years old with a DGBI, used a quantitative assessment of sleep problems, and were available in English. The Effective Public Health Practice Project Quality Assessment Tool for Quantitative Studies was used to assess study quality. We used a protocol to systematically pull and tabulate data across articles with quality assessment ratings. RESULTS: Twenty-four articles with 110,864 participants across 9 countries were included, with most studies being of moderate to weak quality. Patients with DGBIs reported more sleep problems than healthy peers, and some research reviewed found that patients with IBS had more sleep problems than other DGBI diagnoses. Sleep problems in DGBIs were related to worse mood, pain, and functional outcomes. CONCLUSION: Pediatric patients with DGBIs are experiencing sleep problems that can impact outcomes. Screening for sleep problems and targeted treatment is needed to best support these patients.

The influence of child pain catastrophizing and parent behavior on health-related quality of life in pediatric sickle cell disease.

BACKGROUND: Literature suggests that a child's appraisal of pain and parent responses to pain are critical in predicting health-related outcomes. In youth with sickle cell disease (SCD), few investigations have examined child pain catastrophizing, and even fewer have examined the role that parents play in responding to SCD pain within the family context. The purpose of the current study was to examine the relationship between pain catastrophizing, parent response to child SCD pain, and health-related quality of life (HRQoL). PROCEDURE: The sample (N = 100) included youth with SCD (ages 8-18) and their parent. Parents completed a demographic questionnaire and the Adult Responses to Child Pain Symptoms; youth completed the Pain Catastrophizing Scale and Pediatric Quality of Life Inventory-SCD Module. RESULTS: Findings indicated that pain catastrophizing, parent minimization, and parent encouragement/monitoring significantly predicted HRQoL. Minimizing and encouragement/monitoring parent responses moderated the relationship between pain catastrophizing and HRQoL, such that parent minimizing weakened the relationship and parent encouragement/monitoring strengthened the relationship. CONCLUSIONS: Paralleling pediatric chronic pain literature, findings suggest that pain catastrophizing predicts HRQoL in youth with SCD. However, findings from moderation analyses diverge from the chronic pain literature; data suggest that encouragement/monitoring responses strengthen the negative relationship between child pain catastrophizing and HRQoL. Child pain catastrophizing and parent response to SCD pain may be appropriate targets for clinical intervention to improve HRQoL. Future studies should strive to better understand parent responses to SCD pain.

A dyadic analysis of parent and child pain catastrophizing and health-related quality of life in pediatric sickle cell disease.

ABSTRACT: The purpose of this study was to examine the dyadic and individual level effects of parent and child pain catastrophizing on child health-related quality of life (HRQOL) in pediatric sickle cell disease. Questionnaires assessing child pain frequency, child and parent pain catastrophizing, and child HRQOL were completed by youth and their primary caregiver. A Common Fate Model was estimated to test the dyadic level relationship between parent and child pain catastrophizing and child HRQOL. An Actor-Partner-Common Fate Model hybrid was estimated to test the relationship between child HRQOL and individual-level child pain catastrophizing and parent pain catastrophizing, respectively. In each model, child HRQOL was modelled as a dyadic variable by factoring parent and child ratings. Patients (N = 100, M age = 13.5 years, 61% female) and their caregivers (M age = 41.8 years, 86% mothers) participated. Dyad-level pain catastrophizing was negatively associated with child HRQOL, demonstrating a large effect (ß = -0.809). Individual-level parent and child pain catastrophizing were each uniquely negatively associated with child HRQOL, demonstrating small to medium effects (ß = -0.309, ß = -0.270). Individual level effects were net of same-rater bias, which was significant for both parents and children. Both the unique and the overlapping aspects of parent and child pain catastrophizing are significant contributors to associations with child HRQOL, such that higher levels of pain catastrophizing are associated with worse child HRQOL. Findings suggest the need for multipronged intervention targeting factors common to parent-child dyads and factors unique to parents and children, respectively.

Recruiting and retaining parents in behavioral intervention trials: Strategies to consider.

OBJECTIVE: Recruitment and retention are paramount to the success of randomized controlled trials (RCTs); however, strategies and challenges to optimize recruitment and retention are often omitted from outcomes papers. The current manuscript presents strategies used to recruit and retain over 97% parents of young children newly diagnosed with type 1 diabetes for over 15-months post-randomization enrolled in First STEPS, a behavioral, two-site RCT. METHOD: Participants included 157 primary caregivers of young children newly diagnosed with type 1 diabetes. Recruitment and retention strategies are described and include collaboration with medical teams, careful selection and training of study staff, inclusion of a behavioral run-in prior to randomization, financial incentives, creation of a study identity using retention items, obtainment of feedback from community stakeholders, and minimization of participant burden. RESULTS: Use of recruitment and retention strategies resulted in enrollment of 58% of eligible and reached families, with retention of the enrolled sample above 97% for over 15 months. Participants reported high acceptability of and satisfaction with specific recruitment and retention strategies. CONCLUSIONS: The strategies used to recruit and retain caregivers of young children newly diagnosed with a chronic illness were feasible to implement within multidisciplinary diabetes clinics and may apply to other pediatric populations. Future research may benefit from a focus on strategies to engage more diverse samples. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT02527525.

Working Toward an mHealth Platform for Adolescents with Type 1 Diabetes: Focus Groups With Teens, Parents, and Providers.

PURPOSE: The purpose of the study was to explore facilitators and barriers to self-management behaviors in adolescents with type 1 diabetes (T1D) to inform the development of an mHealth platform. METHODS: Eight adolescents with T1D, 9 parents, and 13 health care providers participated in separate focus groups that explored teen self-management behaviors. RESULTS: Adolescents and their parents have distinct preferences for handling diabetes management and use of mHealth technologies. Health care providers support the use of new technologies yet acknowledge concern meeting the potential increased volume of communication requests from teens and families. CONCLUSION: Stakeholders agreed that an ideal mHealth platform would facilitate open communication between teens and their care network and easily integrate with other diabetes technologies. Future directions include incorporating additional feedback from stakeholders to build and modify the mHealth platform. The use of mHealth platforms could be integrated into clinical practice to optimize self-management and support communication between educators, providers, and families in between clinic visits.

Racism and Health-Related Quality of Life in Pediatric Sickle Cell Disease: Roles of Depression and Support.

INTRODUCTIONS: Sickle cell disease (SCD) is the most commonly inherited blood disorder in the United States, and it predominately affects the Black community. SCD is characterized by a number of symptoms, including unpredictable pain, which can lead to hospitalizations. Data indicate that people with SCD experience racism and ample data indicate that racism predicts depressive symptoms and impaired health-related quality of life (HRQOL). In contrast, research suggests that social support might buffer the impact of racism on depression. The aim of this study was to explore associations among perceived racism, depressive symptoms, and HRQOL in adolescents with SCD. Consistent with the literature, it was predicted that perceived racism would predict HRQOL through depression, and social support would moderate the negative impact of racism on depression. METHODS: In a cross-sectional design, 75 inpatient adolescents with SCD completed measures of perceived racism, depressive symptoms, HRQOL, and social support. RESULTS: This results indicated a moderated mediation model with greater perceived racism predicting more depressive symptoms, which in turn related to poorer HRQOL; greater access to social support from individuals with SCD strengthened the perceived racism-depressive symptom association. CONCLUSIONS: Findings suggest a model for how racism, depressive symptoms, HRQOL, and social support might interact in hospitalized adolescents with SCD. Longitudinal or experimental designs are needed to substantiate directionality among these variables. Results highlight several areas for future research and clinical avenues to improve the welfare of youth with SCD.

Parenting Stress, Sleep, and Psychological Adjustment in Parents of Infants and Toddlers With Congenital Heart Disease.

OBJECTIVE: Parents of children with chronic medical needs report increased parenting challenges, poor sleep, and maladjustment. The impact of parenting stress on both sleep and adjustment has yet to be evaluated for parents of infants and young children with congenital heart disease (CHD). We studied the relations among parenting stress, sleep, and adjustment in parents of infants and toddlers with CHD. We expected that sleep quality would mediate the relationship between parenting stress and adjustment. METHODS: Sixty-nine parents of infants and toddlers with CHD were evaluated on self-report measures of illness-related parenting stress (Pediatric Inventory for Parents), sleep (Pittsburgh Sleep Quality Index), and psychological adjustment (Brief Symptom Index-18). RESULTS: The parents of infants and toddlers with CHD reported elevated levels of parenting stress, sleep problems, and maladjustment. The positive relationship between parenting stress and parent maladjustment was mediated by sleep quality. CONCLUSIONS: Findings suggest that parents of infants and toddlers with CHD report high parenting stress, poor sleep, and maladjustment. Analyses indicate the stress-adjustment relationship is mediated by quality of sleep. Given the multiple demands on parents of infants and children with CHD, it is important to attend to parents' overall functioning and mental health. Our findings highlight targets for intervention to improve the well-being of parents of young children with CHD.

Assessment and Treatment of Nonadherence in Transplant Recipients.

Stable intake of an immunosuppressant medication regimen is essential for posttransplant survival in the vast majority of cases. And yet, many patients are nonadherent (do not take their medications as prescribed), and suffer consequences ranging from rejection to morbidity and mortality. We review the evidence related to monitoring of adherence to medications, and intervention strategies. Our aim is to provide a baseline from which readers may approach behavioral aspects of posttransplant care. This review may also help readers in designing clinical programs for routine monitoring of adherence, and inform the choice of intervention when adherence falls below a certain threshold.

Peer Coaching Interventions for Parents of Children with Type 1 Diabetes.

PURPOSE OF REVIEW: Peer support is a promising model of providing psychosocial support to parents of children with type 1 diabetes. This review seeks to discuss the findings of the existing literature in peer coaching as it relates to parents and diabetes as well as to identify gaps in knowledge for future intervention development and implementation. RECENT FINDINGS: Peer support programs vary widely with regard to recruitment, training, and delivery protocols. Across most programs, ongoing support and supervision are provided to peer coaches. Despite inconsistent effects on psychosocial and child health outcomes, parent coaching is consistently a highly acceptable and feasible intervention with parents of children with T1D. Current evidence supports use of parent coaching as part of a multicomponent intervention or program to increase patient satisfaction, but more research is needed to determine if it can stand alone as an active mechanism for behavior change. The use of peer coach interventions for parents of young children with diabetes is feasible to implement and highly acceptable. However, more research is needed to understand the enduring impact for target parents and peer coaches alike, as well as impact on child outcomes.