Psychosocial Staffing and Implementation of the International Society for Pediatric and Adolescent Diabetes Psychological Care Guidelines in U.S. Pediatric Diabetes Clinics.

Background: Few studies have examined the implementation of the International Society for Pediatric and Adolescent Diabetes (ISPAD) Clinical Practice Consensus Guidelines for the Psychological Care of Children and Adolescents with Type 1 Diabetes. Objective: To collect benchmark data on psychosocial staffing and implementation of the ISPAD guidelines across U.S. pediatric diabetes clinics. Methods: Medical (n = 95; 77 endocrinologists and 18 advance practice providers) and psychosocial (n = 86; 43 social workers and 43 psychologists) providers from 98 of 115 contacted clinics completed an online survey (85% response rate). Providers reported the number of psychosocial staff and rated the adequacy of psychosocial staffing, quality of psychosocial care, and adherence to the ISPAD guidelines in their clinics. χ2 Tests and ANOVA were used to examine differences across clinic size and across medical and psychosocial providers. Results: Clinics averaged a total of ∼4 hours per week of psychosocial provider time per 100 patients with type 1 diabetes. Only 27% of providers agreed that psychosocial staffing was adequate, and 35% described their psychosocial care as comprehensive. Implementation of the ISPAD guidelines varied across clinics, with minimal differences across clinic size. Medical providers reported that evidence-based psychological assessment and interventions were delivered consistently by <55% of clinics. Psychosocial, compared with medical, providers were more likely to report frequent implementation of psychosocial assessment and intervention guidelines. Conclusion: Psychological care in U.S. pediatric type 1 diabetes clinics does not consistently meet the ISPAD guidelines, and many clinics lack adequate psychosocial staff. These benchmark data are a foundational step to improve psychosocial care for pediatric patients with type 1 diabetes.

Associations of COVID-19 Stressors and Postpartum Depression and Anxiety Symptoms in New Mothers.

BACKGROUND AND OBJECTIVES: Early reports during the COVID-19 pandemic showed pregnant and postpartum women have increased rates of anxiety and depression. We hypothesized that exposure to more COVID-19-related events (e.g., stay-at-home orders, school closures, work layoffs, family members ill with COVID-19; Event Exposure), greater perceived impact of COVID-19 events on the family (Family Impact), and less social support would be associated with more anxiety and depression symptoms among first-time mothers. METHODS: We interviewed 125 first-time mothers of infants under 3 months of age from four pediatric primary care offices (June 2020 - February 2021) to assess COVID-19 experiences, anxiety and depression symptoms, and social support. Hierarchical linear regression evaluated relations between COVID-19 Event Exposure, COVID-19 Family Impact, and social support on maternal anxiety and depression symptoms. RESULTS: COVID-19 Event Exposure was not associated with depression or anxiety symptom scores. However, greater COVID-19 Family Impact was related to increased maternal depression and anxiety symptoms when controlling for COVID-19 Event Exposure. Reduced social support predicted higher depression symptom scores, but not anxiety symptom scores, when accounting for other variables. CONCLUSION: The number of COVID-19-related events experienced by first-time mothers did not predict anxiety or depression symptoms. However, greater perceived impact of COVID-19 on their family was associated with higher symptoms of anxiety and depression in these mothers. Pediatricians can promote resilience strategies to help new mothers adapt during the COVID-19 pandemic to help decrease anxiety and depression symptoms.

Acceptability and feasibility of a brief behavioral sleep intervention for youth with CF.

Youth with CF are at increased risk for physiological and behavioral sleep difficulties due to disease-specific symptoms and more general pediatric sleep challenges. Despite evidence suggesting that behavioral sleep interventions are effective for improving common sleep difficulties, no interventions exist for youth with CF. SLEEP-CF was designed to fill this gap by providing tailored, flexible behavioral sleep support to youth with CF. Results suggest that SLEEP-CF is an acceptable and feasible behavioral sleep intervention, even in a population with normative sleep habits. There may be benefit in terms of improving sleep knowledge and sleep hygiene. Technology use during and after bedtime is prevalent. CF care team members are encouraged to assess sleep as part of routine CF care, and to provide support as indicated.

Advancing health equity in pediatric cancer through implementation of universal family psychosocial risk screening.

BACKGROUND: Unaddressed psychosocial risks may contribute to disparities in cancer care outcomes and may be addressed by early psychosocial risk screening. In a study implementing universal family psychosocial risk screening in 18 children's cancer programs in the United States, parents, clinicians, and organizational leaders described the importance of universal screening to health equity. PURPOSES: The purposes of this study were to (1) describe the perspectives of parents, clinicians, and organizational leaders regarding the importance of universal family psychosocial risk screening in childhood cancer care and (2) identify barriers and facilitators to improving health equity and decreasing health disparities in childhood cancer through universal family psychosocial screening. METHODS: Nineteen participants (parent advocates, clinicians, leaders in professional organizations and healthcare policy) were interviewed. Directed content analysis was used to identify thematic descriptions. RESULTS: Theme 1: Personal (individual child and family) and systemic barriers to health care contribute to health disparities and can be identified by universal family psychosocial risk screening in pediatric cancer. Theme 2: Universal family psychosocial risk screening in pediatric cancer creates the opportunity for health equity through personalized psychosocial care. Theme 3: Recognition of health inequities and guidance from the Standards of Psychosocial Care for Children with Cancer and their Families suggest that clinicians and healthcare systems are ethically obligated to screen, provide resources, and advocate for services to meet identified needs. CONCLUSIONS: Universal family psychosocial risk screening in pediatric oncology creates the opportunity to support efforts for health equity by guiding delivery of personalized psychosocial care. TRIAL REGISTRATION: NCT04446728 23 June 2020.

A Qualitative Exploration of Sleep Habits and Intervention Needs Among Youth with Cystic Fibrosis.

Evidence suggests that individuals with Cystic Fibrosis (CF) experience difficulties with sleep architecture and hygiene, although research is limited. There are currently no behavioral sleep interventions for youth with CF. The current study used qualitative methods to understand sleep needs and concerns among youth with CF, as well as to obtain feedback about potentially useful behavioral sleep intervention strategies. Semi-structured interviews were conducted with youth with CF between the ages of 11-17 and their parents. Themes were extracted from the data and will be used to inform the development of a brief behavioral sleep intervention for youth with CF. Youth and their parents described several CF-specific sleep concerns, often related to respiratory symptoms, and a number of strategies used to manage these concerns. They also described concerns that apply to the general population, including pervasive use of technology around bedtime. Many evidence-based behavioral sleep intervention strategies are acceptable to youth with CF, although modifications are appropriate to reduce time burden and address CF-specific needs. Youth with CF experience a number of disease-specific and more generalized sleep concerns which are likely amenable to behavioral intervention. Results from this study will be used to inform the development of a brief behavioral sleep intervention for youth with CF.

Using qualitative and participatory methods to refine implementation strategies: universal family psychosocial screening in pediatric cancer.

BACKGROUND: Children with cancer and their families are at risk for short- and long-term psychosocial difficulties. Screening for psychosocial risk remains inconsistent, leading to inequitable access to psychosocial services. The Psychosocial Assessment Tool (PAT) is an evidence-based caregiver report screener of family psychosocial risk ready for implementation in a nationwide cluster randomized trial that will test two implementation strategies across 18 pediatric cancer centers. The current study, conducted in preparation for the trial, solicited the perspectives of key stakeholders about two proposed implementation strategies identified during previous research which focus on health equity and screening of all families (universal screening). Results were used to refine the implementation strategies for testing in the subsequent trial. METHODS: Semi-structured interviews with 19 key stakeholders (parents, health care providers, pediatric oncology organizations, and pediatric healthcare leaders) were conducted regarding the two implementation strategies. Strategy I is a training webinar; Strategy II is training + implementation enhanced resources, which includes a champion at each site and monthly peer support consultation calls. Data were analyzed using directed content analysis with deductively derived codes based on the Interactive Systems Framework and inductive codes based on emerging data. RESULTS: Stakeholder interviews provided rich data to rigorously modify the proposed implementation strategies. Implementation strategies were modified in consistent with these recommendations: engaging providers by framing family psychosocial screening as an opportunity for more efficient and effective practice; setting clear expectations about the importance of screening 100% of children and their families to achieve the goal of universal screening, equity of care, and reduction of disparities; and adapting successful strategies for systematic implementation of screening to ensure optimal engagement with children and their families throughout their care. CONCLUSIONS: Stakeholder input strengthened implementation strategies by suggesting modifications that emphasized health equity and reduction in health disparities. Using implementation science methods to build on a long-standing program of research provided practical insights about immediate needs of families and historical insights regarding structural inequities such as language differences and access to services. Resulting strategies address all levels of the social ecology for children's cancer care, including the patient, family, provider, healthcare system, and community. TRIAL REGISTRATION: NCT04446728 June 23, 2020.

Systematic Review: Pain and Emotional Functioning in Pediatric Sickle Cell Disease.

The objective of this systematic review was to assess the relationship between pain (frequency/intensity/duration, impairment, coping) and emotional functioning in pediatric Sickle Cell Disease, and evaluate the state of the literature. Studies were included if they met each of the following criteria: (a) primarily pediatric sample of youth or young adults up to age 21 years with SCD, (b) examined emotional functioning including anxiety and/or depressive and/or internalizing symptoms, and/or affect, (c) examined pain intensity/frequency/duration and/or pain-related impairment and/or pain coping as it relates to emotional functioning, as defined above. Using the established guidelines for systematic reviews, we searched PsycINFO, PubMED, and CINAHL databases for studies published through June 2018. Screening resulted in 33 studies meeting inclusion criteria. Study data were extracted and evaluated for scientific merit, resulting in four studies being removed. 29 studies were included in the final synthesis. Studies provide strongest evidence of a relationship between increased pain frequency and higher depressive and anxiety symptoms. There are moderate-to-strong associations between pain-related impairment and depressive symptoms, and small-to-strong associations between pain-related impairment and anxiety. When examining pain-coping strategies, maladaptive cognitive strategies show the strongest association with emotional functioning. There is a need for more adequately powered, prospective studies based on theoretical frameworks in order to advance our understanding of the relationship between pain and emotional functioning in pediatric SCD.

Family consequences of potentially traumatic pediatric medical events: Implications for trauma-informed care.

Extensive research demonstrates that pediatric medical events can be traumatic for patients, caregivers, and siblings, but the aftereffects of these potentially traumatic events for the family and its members are not well documented. Through focus groups with patients, caregivers, and siblings, this qualitative study examined the perceived consequences of potentially traumatic medical events for individual family members and the family as a whole. Sixteen focus groups (6 caregiver, 5 patient, 5 sibling) were conducted. Participants included 44 caregivers, 24 patients, and 14 siblings from 28 families with children treated in cardiology, endocrinology, oncology, orthopedics, or pulmonology. Constant-comparison and directed-content analysis were used to analyze the resulting data. Six themes regarding the family consequences of potentially traumatic medical events emerged: (a) family members experience strong emotional reactions and distressing thoughts, (b) family members experience trauma-related reactions and behaviors, (c) family patterns and routines change, (d) family conflict arises, (e) family members feel different from their peers and strive for normalcy, and (f) family members construct positive narratives about these events and experience positive consequences and emotions. These findings reveal the consequences of potentially traumatic medical events that extend beyond traumatic stress symptoms. Moreover, the impact of these consequences is seen within both individual family member responses and responses within the family system as a whole. Understanding both individual- and family-level consequences of medical events is important in order to provide family-centered, trauma-informed care for children with illness or injury and their family members. (PsycINFO Database Record (c) 2020 APA, all rights reserved).