Journal of Pediatric Psychology最新文献

Objective: Caregivers of children with chronic conditions can experience psychological distress and an impact on quality of life (QoL). Cleft lip and/or palate (CL/P) is one of the most common congenital conditions worldwide. Utilizing data extracted from The Cleft Collective cohort studies in the United Kingdom, this study investigated longitudinal psychological well-being in caregivers of young children with CL/P, to inform screening practices and early intervention.

Methods: Baseline (post-diagnosis) and 5-year questionnaire data were extracted for 525 caregivers (342 biological mothers, 183 fathers/partners). Outcome measures included the PedsQL-Family Impact Module, the Perceived Stress Scale, and the Hospital Anxiety and Depression Scale.

Results: QoL significantly improved from T1 (post-birth) to T2 (5 years) as reported by mothers and fathers/partners. At T2, scores on all measures were aligned with, or more favorable than, norms. A minority continued to report clinically significant levels of distress at 5 years. Predictors of poorer outcomes on all measures included a less positive life orientation, more negative appraisals of CL/P, less favorable baseline scores, lower healthcare satisfaction, and prior mental health conditions. Outcomes were also less favorable for caregivers of children with combined cleft lip and palate compared to other cleft types. Reductions in negative appraisals of CL/P were significantly associated with improved QoL over time.

Conclusions: QoL and psychological well-being in caregivers is generally positive at 5 years. A minority experienced poorer outcomes and routine assessment by a multidisciplinary team is therefore recommended. Targeting early negative appraisals may help to facilitate long-term caregiver adjustment.

Objective: Differences of sex development (DSD) affect somatic sex determination and differentiation and are associated with stigmatization risks. This scoping review evaluated reports of stigma experiences described by individuals with DSD, caregivers of individuals with DSD, and non-affected individuals (e.g., laypeople).

Methods: A multi-step, iterative process was used for the search strategy. Databases utilized included Cochrane Library, PubMed, Ovid MEDLINE (Ovid MEDLINE(R) and Epub Ahead of Print, In-process & Other Non-Indexed Citations, Daily and Versions(R)), Embase (Elsevier), CINAHL Complete (EBSCO), PsychInfo (EBSCO), LGBT Life (EBSCO), and Scopus (Elsevier). Peer-reviewed, English language, quantitative or qualitative studies that evaluated stigma or stigma-related attitudes toward individuals with DSD published from 1955 through August 2024 were included. Stigma was categorized as felt (feared rejection), enacted (bullying), or systemic/structural (e.g., institutionalized policies).

Results: Searches yielded 6,892 articles after eliminating duplicates. Following full-text screening, 206 articles were included in the review indicating that DSD-specific stigma was measured. However, measuring stigma was a specific study aim in a minority of publications (51 articles, 25%), with evidence for felt (164 articles, 80%), enacted (127 articles, 62%), and structural/systemic stigma (70 articles, 34%) reported across informants and DSD diagnosis. Few studies utilized validated DSD-specific stigma measures.

Conclusions: Stigma is commonly reported in the literature across the spectrum of DSD conditions but is rarely measured. Stigma was predominantly assessed using open-ended questions, with limited use of validated measures. Results have implications for clinical care, including stigma-related screening and intervention and the need for future research using standardized stigma assessments.

Objectives: To characterize intraindividual trajectories of behavioral and emotional problems in children with congenital heart disease (CHD) between 2 and 5 years of age, and to explore the predictors of these trajectories.

Methods: Sixty-six patients (42 boys) followed at the neurocardiac clinic of the Sainte-Justine University Hospital in Montréal, Québec, Canada were recruited. Their behavioral and emotional problems at 2, 3 ½, and 5 years of age were reported by parents.

Results: Correlations revealed moderate to high rank-order stability in child behavioral and emotional problems across time. Multilevel growth curves indicated significant fluctuations in intraindividual levels of these problems across time, which were not explained by child aging. Lower gestational age was associated with higher levels of anxious/depressed symptoms at age 2 years, which persisted through time. Severe forms of CHD were associated with a time-related decrease in three types of problems: attention, attention deficit and hyperactivity, and oppositional and defiant.

Conclusions: Levels of parent-reported behavioral and emotional problems in children with CHD tend to persist from ages 2 to 5 years, suggesting the importance of early screening. However, unexplained intraindividual changes were also identified, highlighting the necessity to investigate other parental risk factors, for instance. Infants with a lower gestational age should be given special consideration since they continued to display more anxious/depressed symptoms up to school entry compared to children with CHD born at term. The decrease observed in some symptoms for children with severe CHD could result from altered parental perceptions or adverse effects of prolonged hospitalizations.

Objective: Parents of youth with type 1 diabetes (T1D) experience substantial disease-specific demands and distress, yet their perceptions about the emotional support they receive related to the challenges of caring for a child with diabetes have not been well described. This research aimed to characterize the types of emotional support parents of youth with T1D receive and how they experience emotional support.

Methods: As part of a larger qualitative study on diabetes health-related quality of life, 23 parents (96% mothers) of youth with T1D (M age = 10.9 ± 3.8 years; 35% female) completed semi-structured interviews about various aspects of parenting a child with T1D, including emotional support they received. Interviews were transcribed verbatim, coded, analyzed using thematic analysis, and interpreted according to the social-ecological model to generate major and minor themes.

Results: Three themes were constructed. The "Individual" theme included parent-specific factors, including their openness to and satisfaction with diabetes-specific emotional support they receive. Reflecting sources of emotional support, the "Interpersonal" theme included parents' central supportive networks (e.g., family, professionals), and the "Community" theme included parents' extended supportive networks (e.g., community members, T1D organizations, other families). Parents valued emotional support that was nonjudgmental and demonstrated knowledge of T1D.

Conclusions: Both individual and environmental factors relate to how parents seek and receive emotional support from various sources. Clinicians should normalize the experience of needing emotional support to make parents feel comfortable sharing their experiences openly and, when appropriate, help link families to resources to meet their emotional support needs.

Objective: This study aimed to benchmark pediatric psychologists' involvement in caregiver support and identify actionable strategies to enhance training, practice, and advocacy for caregiver well-being and health equity.

Methods: A benchmark survey was completed by 119 pediatric psychologists and trainees, primarily recruited through Society of Pediatric Psychology membership. The 36-item survey assessed training, supervision, screening/intervention practices, billing, documentation, institutional support, and confidence in delivering culturally adapted, evidence-based care for caregivers. Descriptive analyses were conducted to identify baseline trends and develop actionable goals.

Results: Findings revealed substantial variability in the practice of caregiver support by pediatric psychologists and trainees. About half of the respondents reported regularly screening and/or providing interventions for caregivers, though implementation varied significantly. Only 38% of respondents regularly billed for caregiver services, typically using mental health and health/behavior codes, and often documented these services in the child's medical record. Many participants (54%) expressed a need for additional training, and 70% reported insufficient institutional support for navigating caregiver-focused care. Confidence in providing culturally adapted, evidence-based treatments for caregivers varied widely, highlighting significant gaps in training and institutional resources to address diverse caregiver needs.

Conclusions: These findings emphasize the need for enhanced training, institutional support, and resources for pediatric psychologists to address caregiver well-being, with a focus on cultural sensitivity. Strengthening these areas is critical to advancing health equity, and pediatric psychologists are well-positioned to lead efforts in integrating science, practice, and advocacy to address systemic disparities in caregiver support.

Objective: To understand the experiences of mothers of children with cerebral palsy (CP) regarding the impact of caregiving on their mental health and their engagement with Brazil's psychosocial care network.

Method: This descriptive-exploratory qualitative study employed the theoretical framework of Symbolic Interactionism by Herbert Blumer. Interviews were conducted with Brazilian women aged 18 years or older, who had at least one child with CP aged between 28 days and under 19 years. Data collection focused on their experiences with mental health care and their interactions with Brazil's psychosocial care network. The interviews were transcribed and subjected to thematic content analysis.

Results: Fifteen women participated, with an average age of 36 years, predominantly with high school and higher education, who were distanced from the workforce and were married. Two central categories emerged from the interactions analyzed: "My life is not normal": Maternal life with a child with CP amidst mental health demands; and "If you need me, I'm here": The pursuit of maternal self-care, the obstacles faced, and an alternative route, with interconnected subcategories.

Conclusion: The mental health of Brazilian mothers of children with CP is marked by invisibility and multiple challenges. Their social interactions influence their psychosocial well-being, which, while acknowledged, is often neglected in favor of caregiving for their child. These challenges extend to the psychosocial care network in Brazil, characterized by barriers to accessing appropriate care for their needs. As an alternative, mothers engage in self-care activities to reconnect with their personal needs as women.

Objective: In this pilot investigation, we aimed to explore the neurological and biobehavioral mechanisms underlying pain outcomes in adolescent and young adult (AYA) females following orthopedic surgery, an area largely unexplored.

Methods: Functional near-infrared spectroscopy was used to investigate brain responses in the primary sensory cortex (sensory pain processing) and the prefrontal regions (emotional processing) in 24 AYA females who underwent orthopedic surgery within the previous 2 years compared to 20 group-matched controls without a surgical or chronic pain history. A battery of self-reported pain-related and emotional functioning measures (PROMIS; pain catastrophizing) were also administered. Cortical activations and functional connectivity (FC), involving the prefrontal (PFC) and somatosensory cortices (SMC), were assessed during resting state and a descending pain modulation task (conditioned pain modulation).

Results: In the control group, PFC-SMC FC in response to pain was significantly linked to anxiety, whereas this correlation was absent in the post-surgical cohort.

Conclusion: These results highlight distinct altered responses in sensory and emotional brain functioning in AYA females following orthopedic surgery. We suggest that such changes may be related to the involvement of the PFC-SMC communication in the maintenance of chronic pain.

Objective: The aim of this scoping review was to identify and describe the community-engaged research (CEnR) methods used in the development and evaluation of psychological interventions for pediatric sickle cell disease (SCD).

Methods: We conducted a systematic search of three databases in April 2024 (PubMed, Scopus, and PsycINFO). The review was registered with Open Science Framework (DOI: 10.17605/OSF.IO/956AV). All titles, abstracts, and full texts for papers that appeared to meet criteria were independently reviewed by two members of the research team. Inclusion criteria were pediatric or young adult age and use of CEnR for a psychological SCD intervention. Data were extracted from articles meeting these criteria.

Results: The search yielded 235 original articles, of which eight met the inclusion criteria. These articles showed that the involvement levels of community collaborators (patients, families, and community-based organizations) varied across research phases. Notable gaps in the literature were: (1) few studies reported utilizing CEnR methods, (2) variability in language/terms used to describe CEnR methods, (3) limited demographic data about community collaborators, and (4) a lack of description of CEnR frameworks guiding intervention development and evaluation.

Conclusions: This scoping review found few studies describing the use of CEnR methods in a way that would facilitate reproducibility. Recommendations include using MeSH CEnR keywords, identifying CEnR methods and frameworks, and including specific information about community when possible (e.g., demographic information, meeting frequency, etc.).

Objective: Despite the growing number of Hispanic/Latino families in the United States, major concerns are reported when navigating the healthcare system. Monolingual Spanish-speaking families may experience compounded barriers given the inconsistent availability of Spanish resources and services in traditional healthcare settings. Digital health interventions have the potential to alleviate some barriers in healthcare for these individuals. This scoping review summarizes the state of the literature on the development, adaptation, and implementation of pediatric Spanish-language digital health interventions offered to Spanish-speaking families in the United States to better understand current cultural-sensitivity practices and strategies implemented by researchers.

Methods: A search in major databases was completed in May 2024. Articles that discussed the development, implementation, or outcome of any digital health intervention primarily oriented to a Spanish-speaking pediatric population in the United States were included. Telephone- and telehealth-only interventions were excluded.

Results: A total of 44 articles were reviewed, representing 30 unique digital health interventions. Most covered preventive health topics, utilized SMS texting, and were intended primarily for parents/caregivers. Only 22 articles discussed specific methods to culturally tailor the intervention. The most common methods implemented were advisory boards and collecting qualitative data from parents/caregivers and youth. About 50% of articles reported results related to efficacy, acceptability, and feasibility.

Conclusion: While similar methods are implemented to develop and adapt these interventions, there is ample variation throughout the process. Including and learning directly from intended users in the adaptation and development phases of digital health interventions can help create quality and culturally appropriate digital health programs for families.