Journal of Pediatric Psychology最新文献

Objective: Leukodystrophies are a group of genetically determined neurological disorders affecting the white matter of the central nervous system and they have a profound impact on the daily lives of patients and their caregivers. However, only a few studies have analyzed the psychological experiences of parents of children with these conditions. The main aims of the present study were to assess parental burden and parenting stress in caregivers and to evaluate the relationships between parents' experiences and the perceived clinical characteristics of their children.

Methods: Forty-one parents of children and young adults diagnosed with leukodystrophies completed an online survey specifically designed to assess: the characteristics of parents and their children (i.e., current abilities, perceived severity level, and possible regression) and the psychological experiences of parents (i.e., caregiver burden, parenting stress, and perceived social support).

Results: A significant proportion of parents who participated in the study were at risk of experiencing caregiver burden (63%) or parenting stress (49%). Regression analysis showed that perceived social support and the degree of regression (i.e., loss of competence) manifested by the children and young adults emerged as significant factors in determining caregiver burden. However, neither the severity of the child's condition nor the age of the child/young adult appeared to be a determining factor in predicting parental burden or parenting stress.

Conclusions: This study highlights the importance of considering parental well-being in both research and clinical practice, particularly for parents of children with progressive conditions.

Objective: Numerous pediatric and young adult athletes sustain sports-related traumatic brain injuries (TBIs) annually. One of the most common cognitive symptoms of TBIs is memory impairment. This scoping review aimed to synthesize literature on memory impairments following a sports-related TBI and what intervention programs are available to support post-TBI memory rehabilitation in pediatric and young adult athletes.

Methods: Following the PRISMA guidelines, studies that examined memory after a sports-related TBI in athletes 24 years old and younger were eligible for inclusion. Among 1,067 abstracts screened, 161 full texts were reviewed and a total of 95 articles were included in this review. Risk of bias was also evaluated, including selection bias, measurement bias, and bias related to the reporting of data.

Results: 95 full-text articles were included in this review. 60 of 84 (71.43%) studies that included a comparison group or baseline score, observed a decrease in memory functions post-TBI in at least one type of memory. Visual and verbal memory were the two most studied types of memory, which were typically measured by the Immediate Post-Concussion Assessment and Cognitive Testing (ImPACT). American football and soccer were the most studied sports among the injured athletes. Only three interventional studies were identified that examined post-TBI memory rehabilitation in this population.

Conclusions: Memory impairment is common following a sport-related TBI in pediatric and young adult athletes. However, there is a lack of interventional efforts that target this cognitive deficit post-TBI.

Objective: Sickle cell disease (SCD) is an inherited blood disorder characterized by acute pain crises and heightened chronic pain prevalence. Approximately 30%-40% of pediatric patients with SCD have chronic pain, contributing to poorer psychosocial outcomes. Central sensitization (central nervous system hyperexcitability) may heighten chronic SCD pain, yet few investigations have examined factors related to central sensitization in pediatric SCD. Sleep has been identified as a modifiable factor that may influence central sensitization and contribute to pain outcomes in both chronic pain-free and clinical populations.

Methods: Our study examined the role of sleep in relation to central sensitization in 55 participants (26 girls: mean age = 16.43 years) with severe SCD genotypes (hemoglobin Type SS n = 54, Type S beta-zero thalassemia n = 1). Mean-level and within-person variability sleep indices were measured at home over 7 days using wrist actigraphy and daily sleep diaries. To measure central sensitization, participants completed one session of quantitative sensory testing. Conditioned pain modulation (CPM) (n = 34) assessed endogenous pain inhibition, and temporal summation (n = 39) assessed pain facilitation. Multilevel models assessed pain ratings for each task.

Results: When controlling for age, sex assigned at birth, and task unpleasantness, lower actigraphy-derived sleep efficiency was associated with worse pain inhibition during CPM. Sleep was unrelated to pain facilitation during temporal summation.

Conclusions: Findings provide further evidence linking poor sleep to increased pain via impaired pain inhibition but may be best captured using objective sleep measures in pediatric SCD. Interventions aimed at improving sleep efficiency may have downstream effects on clinical pain in this population.

Objective: Complex Care Programs (CCPs) provide care coordination and medical services to children with medical complexity (CMC), but no current tools measure the broad impact of these programs on caregivers and families. The Complex Care Program-Family Impact Questionnaire (CCP-FIQ) was developed to assess this impact.

Methods: A list of 125 items was created based on data from a prior qualitative study. Redundant items were removed, which left 48 items. Next, caregivers of CMC participated in cognitive interviews for a subset of items. Then, the 40-item measure was administered to caregivers along with the Perceived Stress Scale and Pediatric Integrated Care Survey. Exploratory factor analysis was performed.

Results: Eleven caregivers completed cognitive interviews, and 163 completed online questionnaires. Exploratory factor analysis of the CCP-FIQ revealed four factors: General Satisfaction (13 items; α = .97), Caregiver Well-Being (8 items; α = .89), Family Well-Being (5 items; α = .86), and Medical Care Empowerment (5 items; α = .86). Higher Pediatric Integrated Care Survey Family Impact scale scores correlated with higher CCP-FIQ subscale scores (ps < .001). Higher perceived stress correlated with lower scores on Caregiver Well-Being and Family Well-Being subscale scores (ps < .001).

Conclusions: The 31-item CCP-FIQ has promising psychometric properties with excellent internal consistency and assesses four domains of CCP impact on caregivers and families of CMC. Constructs assessed align with prior research validating areas of impact. Next steps include using the CCP-FIQ with additional CCPs to conduct confirmatory factor analysis.

Objective: Relatively few published guidelines on models of care to address the mental health needs of caregivers of patients with chronic illnesses exist. The purpose of this article is to conduct a budget impact analysis to estimate the costs associated with the implementation of a Caregiver Mental Health Program (CMHP) within the pediatric oncology and bone marrow transplant divisions at an academic medical center.

Methods: Psychology labor costs were calculated for individuals involved in the delivery of the CMHP (4 licensed psychologists, 1 postdoctoral fellow) over a 1-year period. Caregiver and patient demographic and clinical data were extracted from the electronic medical record. A cost calculator was used to estimate labor costs associated with program operation.

Results: Providers dedicated 629.23 hours to delivering the CMHP for a total of 60 caregivers during the 1-year study period. The most time was spent in session (66% of total hours), followed by supporting activities (21%), and documentation (13%). Total costs associated with the CMHP were estimated to be $51,395.35 across the five providers.

Conclusions: This budget impact analysis is an important step in equipping relevant parties with information to estimate the financial consequences of the implementation of a CMHP. Limitations include the single-site nature of the study and the lack of information on other financial costs (e.g., start-up, administrative support). Future studies expanding this analysis to support the incorporation of billing/revenue data and caregiver outcomes will provide increased insight into the economic implications of CMHP service lines in pediatric academic medical centers.

Objective: To compare sleep and mental health outcomes in adolescents and young adults (AYA) with cystic fibrosis (CF) and healthy controls and to explore associations between sleep and mental health in CF.

Methods: In this cross-sectional study AYA with CF and healthy AYA aged 14-25 years completed 7 days/nights of actigraphy, the Pittsburgh Sleep Quality Index, PROMIS-Sleep Disturbance scale, PROMIS-Sleep-Related Impairment scale, State Trait Anxiety Inventory, and Center for Epidemiologic Studies Depression scale. For participants with CF, disease characteristics were collected from the Canadian Cystic Fibrosis Registry. Linear regression models were used to determine differences between groups and to examine associations between sleep and mental health outcomes.

Results: Eighty-six participants, 45 with CF (median age = 19 years, IQR = 6 years, 51.1% female, 82.2% on elexacaftor/tezacaftor/ivacaftor, ETI) and 41 healthy comparator participants (median age = 16 years, IQR = 4 years, 53.7% female) participated. No significant differences were found between groups in actigraphically measured sleep, self-reported sleep, or anxiety or depression symptoms. In participants with CF, poorer self-reported sleep quality was significantly associated with greater anxiety (p < .001) and depression symptoms (p < .001), but actigraphically measured sleep was not.

Conclusions: AYA with CF had comparable sleep, anxiety, and depression outcomes as their healthy peers. Only self-reported sleep had a significant relationship with mental health symptoms. These findings stress the importance of concurrent assessment of sleep and mental health in the clinical setting and may inform future longitudinal research. Better understanding relationships between sleep and mental health in AYA with CF could have a significant impact on well-being and quality of life.

Objective: This study used the Supportive Care Needs Framework (SCNF) to examine the psychological well-being of caregivers of children with dementia and their experiences navigating health and disability systems, including financial hardship.

Methods: Caregivers and bereaved caregivers, whose child died from a dementia, completed an online questionnaire and semi-structured interview. We adopted a convergent, mixed-methods approach, combining quantitative and qualitative results to enhance the interpretation of caregivers' experiences and priorities.

Results: Seventy-six caregivers completed the questionnaire, 19 of whom had more than one child affected and 15 of whom were bereaved caregivers. Eighteen caregivers (14 females/4 males; 7 bereaved/11 non-bereaved) participated in interviews. Quantitative data highlighted elevated psychological distress, with 70% scoring moderate-to-severe anxiety, 30% meeting criteria for severe pre-loss grief, and 39% of bereaved caregivers reporting severe, prolonged grief. Integrated qualitative and quantitative data underscored that insufficient psychosocial services and inadequate information navigating and accessing essential health and disability services markedly exacerbated caregiver distress, especially in the context of their child's multifaceted, complex, and progressive needs. We identified key domains evidencing caregivers' unmet needs and priorities, emphasizing the urgent need for specialized models of care and tailored family-centered psychosocial supports, responsive to the fast-changing and progressive needs of children and families.

Conclusion: Caregivers of children with dementia experience critical unmet needs and shoulder enduring burdens throughout the course of their child's progressive decline and following bereavement. Coordinated centers of expertise, equipped to deliver expert medical and integrated psychosocial support, are essential to more effectively support families affected by childhood dementia.

Objective: This study examined parent-child agreement on psychopathology among children with chronic physical illness over 24 months and investigated whether parent psychological distress moderated associations between informant reports over time.

Methods: Data come from an ongoing longitudinal study of the mental health of children with chronic physical illness aged 2-16 years and their primary caregiving parent. Data were restricted to children 10 years of age and older (age-eligible to self-report), and analyses included parent-child dyads who completed baseline and 24-month assessments (n = 106). Child psychopathology was measured using the Emotional Behavioural Scales-Brief Version. Parent psychological distress was a composite of the Center for Epidemiological Studies Depression and Generalized Anxiety Disorder Scales. Kappa estimated agreement and product-term interactions in regression models were used to estimate whether parent psychological distress moderated associations between informant reports of child psychopathology.

Results: Poor-to-moderate informant agreement was found at baseline, which improved to moderate at 24 months. Parent psychological distress moderated the associations between informant reports of behavior problems, β = 0.20 (0.05-0.36) at baseline, and for emotional, behavioral, and attentional problems at 24 months, β = 0.16-0.25. Among parents with elevated psychological distress, agreement with child reports was poor at baseline (intraclass correlation coefficient = 0.35-0.50), but improved to good at 24 months (intraclass correlation coefficient = 0.73-0.85).

Conclusions: There was no evidence that parents with elevated psychological distress negatively biased (overestimated) reports of psychopathology in their children with chronic physical illness. Findings are important when assessing psychopathology in integrated physical-mental health services.

Objective: Children treated for cancer and their caregivers exhibit considerable resilience, yet a subset are at risk for adjustment difficulties. Limited research has utilized a resilience-based theoretical framework, conceptualized as the process of harnessing resources. Grit, defined as perseverance and passion toward long-term goals, is one internal resource to consider. The present study investigates the role of caregiver grit in caregiver and child psychological adjustment following a pediatric cancer diagnosis.

Methods: Participants were caregivers of children within 1 year of a cancer diagnosis (meandays = 105.9, SD = 75.04). Parents provided self-reports of grit and posttraumatic stress symptoms and proxy-reports of their child's behavioral and emotional symptoms.

Results: On average, caregivers (N = 107, 89.6% female, 73.4% White, 42.6% college or higher degree) reported a grit score of 3.40 (SD = 0.67), comparable to the general population. A subset of participants (46.7% of caregivers and 21.5% of children) had psychosocial symptoms above clinical cut-offs. Higher caregiver grit was associated with lower caregiver posttraumatic stress symptoms (F(1,79) = 13.77, p < .001, R2 = 14.8%) and lower child psychological difficulties, F(1,70) = 18.78, p < .001, R2 = 21.2%. Caregiver posttraumatic stress symptoms mediated the relationship between caregiver grit and child psychological difficulties (β = -0.23, 95%BC [-0.47, -0.04]).

Conclusion: Among families affected by pediatric cancer, higher levels of caregiver grit were associated with lower caregiver posttraumatic stress symptoms, and in turn, lower child psychological difficulties. Results suggest that grit is a potential target for promoting both caregiver and child resilience in pediatric cancer services. Longitudinal research should examine how caregivers harness grit, as a possible component of resilience, throughout the cancer treatment and survivorship trajectory.