Journal of Pediatric Psychology最新文献

Objective: While parents of children with cancer experience increased levels of emotional distress, considerable variability in adjustment and distress is evident. The current study aimed to examine the feasibility, acceptability, and satisfaction of a semi-structured intervention protocol based on a three-factor theoretical model of coping and distress using a single-arm study design. The intervention focused on reducing the use of avoidance-focused coping techniques, expanding the repertoire of problem-, and emotion-focused coping techniques, and increasing flexibility in applying these techniques.

Methods: A sample of 22 mothers and 10 fathers (N = 32) of children undergoing active cancer treatment were recruited from a pediatric hematology-oncology department. The manualized intervention protocol consisted of six 1-hr sessions. Parents completed standardized measures at three time points: baseline, post-intervention, and 6-week follow-up. Parents also completed an acceptability measure and four brief open-ended questions evaluating their satisfaction and experience with the intervention.

Results: Of 48 eligible parents who were approached, 32 agreed to participate in the intervention (enrollment rate = 66.67%) and of these, 25 completed the intervention (retention rate = 78.13%), supporting the intervention's feasibility. Parents who completed the intervention provided positive feedback and high satisfaction ratings. Descriptive patterns across pre-, post-, and follow-up assessments reflected expected directions of change in coping and distress measures.

Conclusions: These results support the feasibility and acceptability of a theory-driven intervention based on a three-dimensional model of parental coping and distress. Although preliminary descriptive changes were observed across assessment points, these should not be interpreted as evidence of efficacy. Larger controlled trials are necessary to rigorously evaluate the intervention's effectiveness.

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: This QI project aimed to enhance pediatric intensive care unit (PICU) staff's ability to recognize and compassionately respond to caregiver fatigue (CF), tailoring interventions to the specific needs identified.

Methods: An interdisciplinary team of healthcare professionals developed and implemented a comprehensive strategy to improve the recognition and management of CF. This QI project included creating educational materials for staff, enhancing unit resources, and introducing targeted interventions. Data collection involved pre- and post-project surveys.

Results: The program led to significant improvements in PICU staff's confidence in recognizing and responding to CF, increased availability of unit resources, enhanced staff compassion, and reduced callousness toward others.

Conclusions: This QI project emphasized the role that structured initiatives and interdisciplinary collaboration can play in addressing CF within the PICU setting. Improvements in staff confidence, compassion, and reduced burnout demonstrate the program's effectiveness. These findings underscore the value of targeted interventions and provide a valuable framework for further research and can serve as a model for other healthcare units seeking to integrate CF management into comprehensive patient care.

Objectives: Congenital cytomegalovirus (cCMV) is the leading infectious cause of hearing loss and neurodevelopmental impairment in children, yet the psychosocial impact has only recently begun to be explored. The objectives of this study were to describe the experiences of children and families affected by cCMV, and examine the use of clinical psychology as a model of care.

Methods: Thirty-four families were recruited from a specialist cCMV clinic and invited to access developmental assessment and individual formulation-based clinical psychology intervention, including facilitated parent peer support.

Results: Birth mothers were significantly more stressed than fathers, and poorer parental well-being was associated with negative perception of life changes following cCMV diagnosis, but not related to disease severity. Following clinical psychology intervention, parents reported significant improvements in understanding and confidence in managing their child's needs. However, well-being remained varied, which may reflect the ongoing prognostic uncertainty of having a child with cCMV. Thematic analysis of parental experiences identified five themes: (1) processing the experience of cCMV, (2) disrupted newborn phase, (3) relationship to healthcare, (4) lack of shared experiences, and (5) raising awareness.

Conclusion: Clinical psychology was positively received as a protected space to explore and validate the emotional impact of cCMV, and facilitate connection with others who share personal experience of cCMV. The findings support the use of embedded clinical psychology provision for families affected by cCMV, and the importance of increasing cCMV awareness to improve pathways of care and reduce psychological distress.

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: Children with cancer increasingly undergo germline genetic testing to identify genetic predispositions and inform clinical care options. Parents of children with pathogenic/likely pathogenic (P/LP) germline results have reported more distress than parents of children with negative results. Little is known about modifiable risk and resilience factors for intervention, such as cognitive perceptions. This study examined the moderating effects of parents' cognitive perceptions on adjustment to their child's germline genetic test results.

Methods: Parents (N = 191) completed surveys reporting cognitive perceptions (i.e., intolerance of uncertainty, symptom attributions, and perceptions of child physical vulnerability) and psychological adjustment 1-3.99 years post-disclosure of their child's genetic test results. Moderation analyses examined whether parents' cognitive perceptions moderated the relation between children's cancer predisposition genetic testing results (P/LP, uncertain [VUS], or negative) and parental psychological adjustment.

Results: Moderation analyses revealed significant interactions between genetic test results and both intolerance of uncertainty and psychological attributions for children's symptoms. Specifically, parents of children with P/LP results endorsed significantly more distress and uncertainty compared to each VUS and negative results, only in cases of moderate to high intolerance of uncertainty and psychological attributions (distress outcomes). In contrast, somatic attributions for symptoms and perceived child vulnerability were directly associated with higher distress regardless of results.

Conclusions: Cognitions such as intolerance of uncertainty and psychological symptom attribution may contribute to distress among parents of children with P/LP results. Therefore, cognitive interventions (e.g., Cognitive Behavioral Therapy, Acceptance and Commitment Therapy) may help parents manage distress regarding their child's genetic cancer risk.

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: Much of the literature that examines well-being in parent caregivers of children with chronic conditions addresses psychosocial correlates. Yet, few studies address an integral cognitive aspect of daily life, prospective memory (PM), in association with parent well-being. The present work addressed this gap and examined parents' self-reported PM demands related to managing their child's chronic conditions and frequency of PM forgetting to well-being.

Methods: A sample of 149 parents of children with chronic conditions completed an online survey including measures of parent and family demographics, PM demands, PM forgetting, perceptions of parenting self-efficacy, and well-being: depressive symptoms, anxious symptoms, general stress, and parenting-related stress. Hierarchical regression analyses evaluated the unique contributions of PM demands and forgetting to each well-being outcome over-and-above other known demographic correlates and perceptions of parenting self-efficacy.

Results: Analyses suggested that PM experiences, particularly forgetting, explained a significantly greater proportion of variance in each well-being outcome beyond the demographic factors and perceptions of parenting self-efficacy. Additionally, exploratory analyses revealed that there was an indirect effect of PM forgetting on each wellbeing outcome via self-efficacy, suggesting that greater confidence in one's parenting may explain the link between perceived forgetfulness and detriments to well-being.

Conclusion: The present work adds to the literature by documenting the unique effects of everyday cognitive experiences (PM demands and forgetting) in relation to parent caregiver well-being. These findings have important implications for possible interventions to improve caregivers' everyday remembering and well-being.