Journal of Pediatric Psychology最新文献

Objective: A Type 1 diabetes (T1D) diagnosis can be overwhelming for families. Family support during the first year may improve psychosocial outcomes. Grounded in theory and based upon the lived experiences of youth with T1D and their caregivers, the Teaming up for T1D through Telehealth (Triple T) intervention was developed to promote psychosocial adjustment during the first year post-diagnosis. We describe the development of a personalized telehealth intervention supported by a video library depicting common T1D experiences.

Methods: Age-specific focus groups and subsequent individual interviews explored the successes, challenges, fears, and advice of youth and their families within 2 years of diagnosis. Children (8-12 years; n = 10), teens (13-17 years; n = 11), their caregivers (n = 27), and caregivers of children diagnosed younger than 8 years (n = 12) participated.

Results: Focus groups informed the development of a video library and 6 personalized telehealth sessions throughout the first year post-T1D diagnosis. Five main themes emerged and informed video development: Reassurance that families will be "Okay," strategies for getting to "Okay," managing activities, handling diagnosis disclosure, and family teamwork. Test videos were reviewed by focus groups and revised based on feedback. The video library remained accessible throughout the intervention. The telehealth sessions reviewed families' successes and challenges, provided behavioral health strategies to promote coping and adherence, and recommended specific videos based on each discussion.

Conclusions: This approach to telehealth was informed by youth and caregiver experiences and recommendations. This approach may directly address the needs of families and inform future interventions and education following a T1D diagnosis.

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: To gather parents' perspectives on the experiences of siblings of young children with congenital heart disease (CHD), the impact of CHD on siblings, and the types of resources and supports they need to adjust to CHD within their family.

Methods: A community advisory council guided the study. Parents of children with CHD, currently 1-7 years old, who had surgery in their first year of life, were eligible for participation if they were fluent in written English and had internet access. Recruitment through several CHD-specific nonprofit organizations produced a national sample of parents (N = 108). Of the 73 who had non-bereaved heart-healthy children, 59 (81%) provided sibling-relevant data for this study. Most parents were non-Hispanic White (n = 54; 91.5%) mothers (n = 41; 69.5%; Mage = 36.10; SDage = 5.0) reporting on siblings older than the child with CHD (n = 44; 74.6%). Data were qualitative, collected through crowdsourcing, and coded to distill themes.

Results: Three themes emerged: (1) CHD directly affects siblings' psychosocial functioning and daily activities, (2) CHD alters roles and relationships within the family, with impacts to siblings, and (3) families seek and appreciate support for heart-healthy siblings from extended family and friends, the healthcare team, and the community, but resources are variable.

Conclusion: Parents described specific ways that CHD impacts their heart-healthy children, including their psychosocial functioning, role in the family, and support from the community. Findings highlight the need for family-centered care in CHD, including screening to identify siblings at risk for psychosocial difficulties and provision of appropriate supports to meet sibling and family needs.

Objectives: Spirituality is a recognized element of palliative care, with documented benefits for adult patients. However, limited research exists on how religion and spirituality affect children at end-of-life (EOL) and their parents. This review aimed to evaluate the quality of existing studies, describe the spiritual and religious beliefs and practices of pediatric patients and their parents, examine how these factors influence care, coping, and decision-making, and assess the importance of spiritual support during EOL.

Methods: A systematic review was conducted according to PRISMA guidelines. This review included 21 reports with 18 from database searches (MEDLINE, CINAHL, PsycINFO) and 3 from hand-searched references published between 2013 and 2024. The date last searched was December 31, 2024. Study quality was assessed using the Standard Quality Assessment Criteria (QualSyst).

Results: Findings revealed diverse religious and spiritual practices among families, including faith stability, spiritual care use, and prayer. Key outcomes associated with spirituality included enhanced coping, acceptance, meaning-making, hope, caregiver spiritual well-being, decision-making, and improved parent-child communication. Across studies, spiritual support emerged as a vital component of the pediatric EOL experience.

Conclusions: The review highlights the significant role of religion and spirituality for parents navigating their child's EOL, with implications for emotional and psychological support. These findings underscore the importance for healthcare providers to recognize and integrate spiritual care into pediatric palliative settings. However, the lack of direct pediatric patient input indicates a need for further research to understand how children experience and are influenced by their own religious and spiritual beliefs at EOL.

Objective: Adolescents with chronic health conditions (CCs) face unique developmental challenges that affect their psychological well-being. Benefit-finding and growth (BFG) may serve as a psychological resource for this population. However, longitudinal evidence on the hypothesized predictors of BFG and its impact on subjective well-being (SWB) remains scarce. This study explores the reciprocal associations between emotion-focused coping, BFG, and SWB in adolescents with CCs.

Methods: The sample included 498 adolescents (aged 12-21 years) with type 1 diabetes, juvenile idiopathic arthritis, or cystic fibrosis receiving care in Germany. Using latent cross-lagged panel models, we analyzed the directionality of the relationships between coping strategies (acceptance, cognitive reappraisal, seeking social support), BFG, and SWB (satisfaction with life, positive well-being) over 1 year. Sociodemographic and disease-related variables were controlled.

Results: Seeking social support at T1 was significantly associated with higher levels of BFG at T2, whereas no significant prospective associations were observed for T1 acceptance and reappraisal. An inverse cross-lagged association was found between BFG at T1 and reappraisal at T2. Furthermore, BFG at T1 was significantly associated with higher satisfaction with life at T2.

Conclusions: This study provides the first longitudinal evidence of bidirectional relationships between emotion-focused coping and BFG, as well as BFG and SWB in adolescents with CCs. The findings highlight the crucial role of seeking social support in promoting BFG, which enhances adaptive emotion regulation and satisfaction with life. Future interventions should target social resources and cognitive coping strategies to improve psychological well-being in this population.

Clinical trial registration: German Clinical Trials Register (DRKS), no. DRKS00025125. Registered on May 17, 2021.

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: Supporting pediatric psychologists who identify as women in overcoming barriers to scientific writing is critical for the career development and advancement of pediatric psychology science priorities of the Society of Pediatric Psychology 2022-2026 Strategic Plan. The purpose of this topical review is to introduce structured writing retreats as a promising strategy for supporting scientific writing among pediatric psychologists.

Methods: Recent literature was reviewed to identify barriers to scientific writing and the impacts of structured writing retreats.

Results: Service burdens, social inequities, and environmental factors impact scientific writing productivity. Structured writing retreats are multi-day, off-campus sessions that can address barriers to writing by providing the protected time and space, supportive peer environment, and behavior change strategies critical for writing. Recommendations for faculty, mentors, and institutions to support engagement in structured writing retreats are provided.

Conclusions: This topical review is a call for leaders in pediatric psychology to champion structured writing retreats as a strategic approach to overcoming writing barriers and increasing research productivity.

Objective: To provide pragmatic guidance on data analysis, integration, and reporting guidance for investigators new to mixed methods research.

Methods: Three core mixed methods designs (convergent, explanatory sequential, and exploratory sequential) are described. Key decision points related to data integration-specifying intent, data selection, data preparation, integration strategies, use of analysis software, reporting-are explained, including comparison of decision points across the different mixed methods designs.

Results: Recommendations for addressing key decisions during analysis are provided and supported with published examples from mixed methods studies focused on pediatric populations.

Conclusions: Integration of qualitative and quantitative data is the defining characteristic of mixed methods research but can be challenging to fully achieve and adequately report. Decision-making about the aims of the mixed methods analysis and how they will be achieved should begin early in the research process through collaboration among team members' with expertise and experience in qualitative, quantitative, and mixed methods studies. A variety of approaches to data integration and write-up of the integrated results can be taken and are reviewed in the current manuscript.

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.