Journal of Pediatric Psychology最新文献

Objective: This study presents a novel interview and coding system to assess the transition from pediatric to adult healthcare in individuals with spina bifida (SB). Inter-rater reliability, descriptive data, and demographic and condition severity correlates are reported.

Methods: Young adults with SB, aged 19-26 at Time 6 (n = 86) of a longitudinal study, completed the Transition to Adult Healthcare in Young Adults with Spina Bifida Interview which assessed: (1) the transition status (pediatric vs. adult) of primary care providers, (2) the transition status of specialist providers, (3) transition-related discussions and meetings with health professionals, (4) subjective reports of transition status, and (5) self-reports of how medical complications/emotional problems are managed during the transition.

Results: Findings revealed high levels of inter-rater reliability. A large percentage (30%-48%) reported having specialty providers who were pediatric-oriented. Half reported that they had not had a transition-related discussion or were advised not to begin the transition process. Roughly half reported that they had not transitioned or were still in the planning phase. Most reported that they could make their own decisions regarding medical complications, but felt less able to assess the urgency of a complication, the need for action, or how to prevent a complication. Shunt status was associated with several transition status indicators.

Conclusions: This study supports the use of an interview-based measure in young adults with SB. Findings revealed that a large percentage of young adults aged 19-26 had not transitioned to adult healthcare and felt ill-equipped to manage health complications.

Objective: Functional constipation is common in youth and negatively impacts quality of life. It is also linked to increased behavioral and emotional symptoms. While the impact of mental health problems on individual and family well-being is known, the combined association of youth behavioral/emotional symptoms and constipation severity on family quality of life remains unclear. This study examined the relationship between these factors and constipation-related family quality of life.

Methods: Participants were 231 children and adolescents (ages 2-18 years; M = 7.62, SD = 3.41; 50.6% female; 63.2% white) seen for an initial visit in a pediatric multidisciplinary functional constipation clinic. Families completed questionnaires assessing constipation severity (bowel movement frequency, accidents, abdominal pain, withholding), behavioral/emotional symptoms (Pediatric Symptom Checklist), and constipation-related health-related quality of life (Parental Opinions of Pediatric Constipation [POOPC]). Hierarchical linear regression was used to analyze the data.

Results: Greater frequency of bowel accidents, greater withholding behaviors, and higher Pediatric Symptom Checklist total scores were each significantly and independently associated with higher POOPC scores (lower health-related quality of life). Together, these factors accounted for 37% of the variance in POOPC scores.

Conclusions: In youth with functional constipation, bowel accidents, withholding, and parent-reported behavioral/emotional symptoms are significant predictors of poorer constipation-related family quality of life, highlighting the importance of addressing both medical and behavioral aspects in this population.

Objective: To determine growth in condition-related self-management skill mastery in youth with spina bifida (SB) over time and examine neuropsychological functioning, specifically attention and executive functioning, as a predictor of growth in skill mastery.

Methods: Youth with SB (N = 140; Mage=11.43) completed a neuropsychological assessment, and parents and teachers completed informant-based measures of attention and executive functioning at Time 1 (T1). Parents reported condition-related skill mastery at T1, Time 2 (T2), and Time (T3), with timepoints occurring at 2-year intervals. Linear mixed effects growth curves were utilized to determine change in skill mastery over time with and without neuropsychological functioning predictors.

Results: Condition-related self-management skill mastery significantly increased over time across subscales. Attention, working memory, and shifting abilities were significantly associated with self-management skill mastery across subscales at 11.5 years, with better neuropsychological functioning being associated with better skill mastery. Better working memory and shifting abilities at baseline predicted increases in medication skill mastery over time. Contrary to expectations, better attention and planning/organizing abilities at baseline predicted decreases in diet/exercise and catheterization skill mastery over time, respectively.

Conclusions: Youth with SB exhibited gains in condition-related self-management skill mastery over time. Neuropsychological functioning was found to be a stronger predictor of skill mastery at 11.5 years than growth over time, suggesting that youth with better neuropsychological functioning master self-management skills earlier in development. Findings have important implications for clinical monitoring and interventions to support the transfer of medical responsibility and reduce medical nonadherence and secondary health complications.

Objective: This study describes adolescent and young adult (AYA) cancer survivors' self-image, including the role of social media, in the context of social interaction. More specifically, this study describes how survivors view their physical appearance, personality, and capabilities throughout their cancer experience.

Methods: Data were derived from semi-structured interviews of 21 AYA oncology survivors, ages 16-22 years, who were treated for cancer 1-4 years prior to participation. A five-phase approach for data analysis that incorporated both deductive and inductive qualitative strategies was used to identify themes of self-image.

Results: The analysis revealed two themes for each of the self-image components (personality, appearance, and capabilities). Specifically, AYA reflect on how a cancer diagnosis affects their identity, self-esteem, physical features, and social normalcy. In terms of the role of social media, AYA cancer survivors identified that social media promotes an unrealistic expectation and is used for external validation.

Conclusions: Survivors report ways in which their cancer experience and social perceptions contribute to their sense of self. The multifaceted aspects of self-image described are key concepts that psychosocial providers should assess throughout the AYA cancer trajectory. From AYAs' perspective, social media contributes to their self-image by creating a pressure to conform to societal expectations on appearance; additional research and support to mitigate this impact are warranted. Increasing AYAs' media literacy and enhancing psychosocial assessments and support to navigate online and offline social worlds may help shape AYA's self-image.

Objective: Parents of children with immunoglobulin E (IgE)-mediated food allergies (FA) at risk of anaphylaxis may experience an increased psychosocial burden. Thus, integrating psychosocial support for parents into FA management is essential. Previous psychosocial interventions have demonstrated positive effects for caregivers of children with FA. This study aimed to implement a comprehensive online pilot program for caregivers of children aged 2-8 years diagnosed with FA that carries a risk of anaphylaxis. The primary objectives related to the intervention were to assess quantitative changes in FA-specific parental self-efficacy and burden, stress, and well-being; explore qualitatively the parents' experiences; and evaluate overall impressions.

Methods: A mixed-method, single-arm, non-randomized, pre-post measurement design was used in which an online, six-session-long pilot intervention was conducted among mothers of children with FA. Quantitative methods (N = 25) included administration of self-report questionnaires pre- and post-intervention. Semi-structured interviews on individual intervention experiences (N = 11) were qualitatively analyzed by using interpretative phenomenological analysis (IPA).

Results: Paired-samples t-test indicated significant improvements for FA-specific parental self-efficacy and burden, while non-significant changes were observed for stress and well-being. Increases in self-efficacy were greater among parents who had not previously experienced an anaphylactic event. IPA revealed beneficial shifts in acknowledging and sharing burdensome emotions and parental challenges, while perceived limited changes in social environment's FA management. Professionally facilitated peer support and psychological techniques acquired during the program were identified as major drivers of observed changes.

Conclusions: Preliminary improvements in FA-specific parental outcomes and high perceived usefulness were observed; however, a rigorously designed definitive trial is needed to establish the program's effectiveness.

Objectives: This systematic review (PROSPERO ID: CRD42022356654, AMNR junior research grant) evaluated the effectiveness of parenting interventions in pediatric type 1 diabetes, designed to enhance supportive parenting behaviors, in improving family dynamics, parent-, child-, and diabetes-related outcomes.

Methods: We systematically searched PubMed, EMBASE, Cochrane, CINAHL, and PsycINFO for studies from 1980 to February 25, 2025. We included reports of controlled and uncontrolled studies describing quantitative change. Data were synthesized narratively, and intervention content was coded according to a behavioral taxonomy. Risk of bias was assessed using Cochrane's Risk of Bias (2.0) tool and the ROBINS-I tool for controlled and uncontrolled studies, respectively.

Results: After screening 12,654 reports, we included 51 studies (across 72 reports) describing findings of 37 unique interventions. Most studies and outcomes had an increased risk of bias. Whereas overall effects were mixed, intensive, targeted interventions had the most impact on psychosocial and diabetes outcomes. Some preventive interventions and, notably, control groups also showed effects, with most promising effects in subgroups. Many preventive intervention studies were underpowered. A diabetes-specific focus seemed necessary, although not sufficient, to affect diabetes outcomes. Several strategies were used to stimulate parents toward changing their own and-ultimately-their children's behavior, although individual components could not be uniquely related to intervention effectiveness.

Conclusions: Targeted and preventive parenting interventions serve as a potential, although not exclusive, approach to improve psychosocial and diabetes outcomes. Future research should elucidate which families benefit from parenting interventions compared to other educational or supporting interventions, thereby delineating their essential intervention components.

Objectives: Chronic pain among youth with sickle cell disease (SCD) is associated with significant functional disability. Physical activity is recommended for pediatric chronic pain and is safe, feasible, and beneficial for individuals with SCD, yet uptake is limited. This study describes the adolescent- and caregiver-centered lived experience of physical activity within the context of SCD and chronic pain to inform intervention targets.

Methods: Adolescents aged 12-18 years with any SCD genotype and medium or greater risk of chronic pain (Pediatric Pain Screening Tool) were recruited across two sites for an intervention development study. Semi-structured interviews elicited perspectives related to physical activity and its role in pain management. A deductive-inductive approach was used with the Fear Avoidance Model as an analytic framework.

Results: Adolescents (n = 12; 15.1 ± 1.5 years) were Black/African American, even sex distribution, with 92% Medicaid-covered. Caregivers (n = 12; 39.4 ± 5.8 years) were Black/African American, and 100% were mothers/stepmothers. Physical activity facilitators included structured social activities and older age. Barriers included triggering or worsening pain and safety concerns expressed by caregivers and adults. Caregivers emphasized that adolescents developing self-awareness helps them modify physical activity to prevent pain. Benefits of physical activity to manage pain included minimizing stiffness and pain exacerbation and sustained pain reduction.

Conclusions: Physical activity to manage chronic SCD pain may require individualization and adaptation to address patient and caregiver concerns. Future intervention targets need to address unique facilitators and barriers, minimize challenges, and promote benefits of physical activity for chronic SCD pain.

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.