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.

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.

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: 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: Although childhood cancer survivors require lifelong "risk-based" follow-up care, most adult survivors do not receive such care, and many are lost during the transition from pediatric to adult follow-up care. The goal of this study was to evaluate the feasibility and acceptability of the "Managing Your Health" self-management and peer mentoring intervention to improve transition readiness and self-management skills among young adult survivors of childhood cancer.

Methods: Survivors of childhood cancer ages 18-25 years were randomized 1:1 to the Managing Your Health intervention (six video/phone calls with a peer mentor, another young adult survivor, and five online educational modules) or usual care. Feasibility was measured through enrollment rates, retention rates, and engagement and satisfaction with the intervention. Participants completed measures of transition readiness, self-efficacy, and perceived support at baseline and 2-, 6-, and 12-months post-enrollment.

Results: A total of 50 participants (Mage = 21.1 years; 60% male) enrolled (32% of the total pool was contacted; 76% of those were screened; 94% of those screening eligible enrolled). Twenty-two (88%) of the 25 intervention participants completed the peer mentor calls. On average, participants completed 96% of the online modules, often closely timed to peer mentor calls. Participants indicated high satisfaction and acceptability of the intervention and suggested some improvements to the online modules.

Conclusions: Managing Your Health was feasible and acceptable to young adult survivors and mentors. Peer mentors appeared to serve as supportive accountability agents encouraging engagement with the online modules. Additional refinements will be made to the intervention prior to efficacy testing.

Objective: This study provided descriptive, psychometric, and correlational data on activity involvement, including engagement with and adherence to medical care activities, using the daily phone diary (DPD) methodology within the context of an ongoing longitudinal study of adolescents and young adults (AYAs) with spina bifida (SB).

Methods: As part of a longitudinal study, AYAs with SB aged 16-24 at Time 5 (n = 68) and aged 19-26 at Time 6 (n = 75) completed a DPD across 3 days, along with measures of demographics, condition severity, and medically related psychosocial constructs.

Results: Findings revealed that AYAs spent roughly two-thirds of their time either sleeping or engaged in recreational activities in their homes. They were more likely to spend time at home (with 50% of this time engaged in less active activities such as TV watching) and less time engaged in school and work activities than has been found in AYAs with other chronic medical conditions. Participants were also more likely to report low rates of catheterization, suggesting adherence challenges. The DPD method showed satisfactory stability over time. DPD data on medical care activities demonstrated adequate convergent validity as well as correlations with lesion level and measures of medical responsibility and medical skill mastery.

Conclusions: This study supports the use of the DPD method to assess engagement with and adherence to medical care activities in AYAs with SB. It also provides an assessment of engagement in other activities, such as in-home recreation and out-of-home school- and work-related activities.

Objective: This study aimed to investigate the role of environmental pollutants, specifically nitrogen dioxide (NO2) and particulate matter (PM10), on children and young adults (CYA) living with sickle cell disease (SCD) in the United Kingdom. Given the heightened vulnerability of this population due to socio-environmental factors, we explored how these pollutants influence hospitalization rates, sleep quality, and cognitive function.

Methods: Data were analyzed from the London Sleep Asthma Cohort, which included 94 CYA living with SCD at Visit 1, although this full sample was not available for all analyses. Participants' exposure to NO2 and PM10 was determined using air quality data linked to their residential postcodes. Hospitalizations, sleep quality, and cognitive function were assessed through medical records, caregiver questionnaires, and cognitive testing. Multiple regression analyses were conducted to determine the relationship between pollutant exposure and health outcomes, controlling for age, community deprivation, and asthma diagnosis.

Results: The study found that NO2 exposure significantly predicted lifetime hospitalizations for acute chest syndrome (ACS), particularly among participants with asthma. However, despite some trends toward significance, no significant relationships were observed between pollutant exposure and pain-related hospitalizations, sleep quality, or cognitive function.

Conclusions: Our preliminary findings suggest that NO2 exposure exacerbates respiratory complications in CYA with SCD, especially in those with asthma. Our results underscore the need for targeted public health interventions to mitigate air pollution in marginalized communities, which could reduce ACS-related hospitalizations and improve health outcomes for vulnerable populations. Further research is recommended to explore the mechanisms linking pollution to SCD complications.