A systematic review of parent and family functioning in pediatric solid organ transplant populations

The process of pediatric solid organ transplantation (SOT) places new and increased stressors on patients and family members. Measures of family functioning may predict psychological and health outcomes for pediatric patients and their families, and provide opportunity for targeted intervention. This systematic review investigated parent and family functioning and factors associated with poorer functioning in the pediatric SOT population. Thirty‐seven studies were identified and reviewed. Studies featured a range of organ populations (eg, heart, liver, kidney, lung, intestine) at various stages in the transplant process. Findings highlighted that parents of pediatric SOT populations commonly report increased stress and mental health symptoms, including posttraumatic stress disorder. Pediatric SOT is also associated with increased family stress and burden throughout the transplant process. Measures of parent and family functioning were associated with several important health‐related factors, such as medication adherence, readiness for discharge, and number of hospitalizations. Overall, findings suggest that family stress and burden persists post‐transplant, and parent and family functioning is associated with health‐related factors in SOT, highlighting family‐level functioning as an important target for future intervention.Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/136483/1/petr12900.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/136483/2/petr12900_am.pd

Educational needs in families of pediatric liver and kidney transplant recipients: A quality improvement project

Parents of pediatric liver and kidney transplant recipients were surveyed regarding their current education plans (eg, Individualized Education Program, 504), satisfaction with these plans, and interest in educational support from the psychosocial transplant team. Survey results indicate high rates of IEP and 504 plans, academic and related services, and accommodations among this population. The majority of parents/guardians reported satisfaction with their child’s current school plan and did not report need for additional transplant team support specific to school services on the survey measure. However, other information highlights the importance for pediatric transplant teams to consider other ways to support this population’s educational needs.Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/149505/1/petr13412_am.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/149505/2/petr13412.pd

Psychosocial functioning in pediatric heart transplant recipients and their families

Across pediatric organ transplant populations, patient and family psychosocial functioning is associated with important health‐related outcomes. Research has suggested that pediatric heart transplant recipients and their families are at increased risk for adverse psychosocial outcomes; however, recent investigation of psychosocial functioning in this population is lacking. This study aimed to provide a contemporary characterization of psychosocial functioning in pediatric heart transplant recipients and their families. Associations between psychosocial function, demographic variables, and transplant‐related variables were investigated. Fifty‐six parents/guardians of pediatric heart transplant recipients completed a comprehensive psychosocial screening measure during transplant follow‐up clinic visits. Descriptive statistics, correlational analyses, and independent samples t tests were performed. Forty percent of pediatric heart transplant recipients and their families endorsed clinically meaningful levels of total psychosocial risk. One‐third of patients presented with clinically significant psychological problems per parent report. Psychosocial risk was unassociated with demographic or transplant‐related factors. Despite notable improvements in the survival of pediatric heart transplant recipients over the past decade, patients and families present with sustained psychosocial risks well beyond the immediate post‐transplant period, necessitating mental health intervention to mitigate adverse impact on health‐related outcomes.Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/142422/1/petr13110.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/142422/2/petr13110_am.pd

Generalized and specific anxiety in adolescents following heart transplant

Mental health concerns are associated with worse outcomes after adult heart transplant. Illness‐specific anxiety is associated with worsened psychological well‐being after other solid organ transplants but has never been characterized after pediatric heart transplant. This single‐center cross‐sectional study aimed to evaluate illness‐specific and generalized anxiety after heart transplantation in adolescents. A novel 12‐item PHTF, GAD‐7, and the PedsQL were administered. Univariate associations of demographics, clinical features, and medication adherence as measured by immunosuppression standard deviation with the PHTF and GAD‐7 scores were evaluated. Internal consistency and validity of the PHTF were examined. In total, 30 patients participated. The most common illness‐specific fears were retransplantation, rejection, and more generally post‐transplant complications. The PHTF had good internal consistency (Cronbach α = .88). Construct validity was demonstrated between PHTF and GAD‐7 (r = .62) and PedsQL (r = −.54 to −.62). 23% endorsed moderate to severe generalized anxiety symptoms. More severe symptoms were associated with older age at survey (P = .03), older age at listing (P = .01) and having post‐transplant complications (P = .004). Patients with moderate or severe symptoms were more likely to report late immunosuppression doses (P = .004). Illness‐specific and generalized anxiety may be prevalent after pediatric heart transplant. Screening for anxiety in adolescents post‐transplant may identify those at risk for adverse outcomes including non‐adherence. The PHTF is a brief, valid, and reliable instrument identifying illness‐specific anxiety in this population.Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/153669/1/petr13647.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/153669/2/petr13647_am.pd

Psychological Functioning in Pediatric Patients with Single Ventricle Congenital Heart Disease: A Meta-Analysis and Systematic Review Protocol

Mental health is an important yet understudied area of care for patients with congenital heart disease. Through limited studies, it is known that children and adults with congenital heart disease have increased incidence of mental health disorders when compared to their peers [1-3]. Some studies estimate that over half of adult patients with congenital heart disease have significant symptoms of a mood or anxiety disorder [3], although it is very likely that these symptoms are underrecognized. It is also known that in adults with congenital heart disease, depression is responsible for the variability of self-reported health status of patients, including physical functioning [4]. A prior review and meta-analysis of patient with complex congenital heart disease showed an increased risk of internalizing and externalizing behavior problems, however this review was not specific to the single ventricle population [5]. A recent review and meta-analysis of patients with children and adults with single ventricle physiology found worse health-related quality of life outcomes in this population [6], however currently less is known about psychological functioning specifically in the pediatric single ventricle population. The aim of this systematic review is to summarize and meta-analyze the existing literature of psychological outcomes in pediatric single ventricle patients. It is hypothesized that pediatric patients with single ventricle heart disease will have an increased risk of internalizing and externalizing problems as compared to their peers.No funding associated with this projecthttp://deepblue.lib.umich.edu/bitstream/2027.42/167623/3/SVSysRevProposal2021.pdfDescription of SVSysRevProposal2021.pdf : This is a protocol for an evidence sythesis project on Psychological Functioning in Pediatric Patients with Single Ventricle Congenital Heart DiseaseSEL

Systematic review of father involvement and child outcomes in pediatric chronic illness populations

© 2019, Springer Science+Business Media, LLC, part of Springer Nature. The overall objective of this paper was to systematically review and synthesize the emerging literature investigating the role of father involvement in pediatric outcomes among chronic illness populations. This review sought to answer the following questions: (1) what measures are used to assess father involvement in pediatric chronic illness populations, and who is the respondent, and (2) how is father involvement associated with child psychosocial and health related outcomes in pediatric chronic illness populations? Databases were searched using a key word search strategy. Articles were screened according to exclusion criteria, resulting in 15 identified articles that included a pediatric illness population, and assessed both father involvement and a child outcome variable. Qualitative analysis revealed that several measures have been used to assess father involvement in pediatric chronic illness populations. As a whole, the majority of findings indicate that better outcomes are associated with more father involvement in illness and non-illness related activities, and higher father–child relationship quality. Contradictory findings may be due to the quality of the involvement being assessed, or the possibility that father’s become more involved with illness tasks in response to their child’s poorer health outcomes. Future research should include the development and use of psychometrically sound measures of father involvement and employ more diverse samples with rigorous methodology

Psychosocial outcomes in pediatric patients with ventricular assist devices and their families: A systematic review

Ventricular assist device (VAD) therapy has provided pediatric patients with severe heart failure new therapeutic options. However, pediatric patients and families receiving VAD therapy also experience psychosocial challenges. No synthesis of the literature on psychosocial outcomes within the pediatric VAD population has been conducted; thus, the current review sought to systematically investigate the impact of pediatric VAD on patient, parent, and family psychosocial outcomes and assess variables associated with poorer outcomes. Literature searches were conducted in PsycInfo, PubMed, and Cumulative Index to Nursing and Allied Health Literature databases and full texts were assessed according to pre‐established inclusion criteria. Main findings and study quality were reviewed. Sixteen studies were included in the present review. Findings highlighted the likelihood for psychological sequelae among pediatric patients and families receiving VAD therapy, including decreased psychological and emotional well‐being, elevated stress, and difficulty coping with changes to family dynamics and responsibilities. Health‐related quality of life was reported comparable to that of healthy peers and children with other cardiac conditions. Patients and families on VAD therapy experience significant difficulties in psychological well‐being and challenges related to adjustment. The current review underscores the importance of ongoing support for families and continued assessment of psychosocial functioning across VAD support. Three critical periods for increased distress were identified: 1) immediately following VAD implantation, 2) discharge home and the weeks following discharge, and 3) long‐term VAD therapy.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/167822/1/petr14001_am.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/167822/2/petr14001.pd

Discordant parent reports of family functioning following childhood neuroblastoma: A report from the children\u27s oncology group

This study examined whether late effects and poor survivor quality of life (QOL) characterize discordant parent dyads and unhealthy family functioning in neuroblastoma survivors. Parents of 135 neuroblastoma survivors (78 two-parent dyads) completed measures of late effects and family functioning, and survivors completed the Pediatric Quality of Life Inventory 4.0 (PedsQL). Although average family functioning scores were healthy, parent concordance was lower for family functioning than late effects reports. Parent concordance did not differ by late effects or QOL. Family functioning scores were poorer when survivors had more late effects and low physical QOL scores. Parent data should be considered separately when examining child cancer outcomes. © 2012 Taylor & Francis Group, LLC

Self-reported quality of life in children with ventricular assist devices

BackgroundWe sought to describe QOL in children with VAD and to identify factors associated with impaired QOL.MethodsThere were 82 children (6–19 years) in the Pediatric Interagency Registry for Mechanical Circulatory Support who completed the PedsQL +/− a VAD-specific QOL assessment pre-VAD implant (n = 18), 3 months post-VAD (n = 63), and/or 6 months post-VAD (n = 38). Significantly impaired QOL is a score >1 SD below norms.ResultsStudy patients were 59% male, 67% Caucasian, with cardiomyopathy diagnosis in 82%, and median age at implant of 14 y (IQR 11–17). PedsQL scores were lower than norms for physical (p 2 weeks/ongoing post-VAD (p = .04).ConclusionPhysical QOL is significantly impaired in most children pre- and post-VAD. However, psychosocial QOL is not significantly impaired in most children post-VAD suggesting VAD implantation may improve psychosocial QOL in children.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/172804/1/petr14237_am.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/172804/2/petr14237.pd

Burnout, professional fulfillment, and post‐traumatic stress among pediatric solid organ transplant teams

BackgroundAdverse effects of clinician burnout have been studied across multiple specialties; however, there have been no studies examining rates of burnout among pediatric solid organ transplant teams. This study aimed to measure burnout, work exhaustion, professional fulfillment, and post‐traumatic stress symptoms among clinicians and administrators practicing in this high‐stress field.MethodsThis cross‐sectional study utilized a 50 item web‐based survey that included the Personal Fulfillment Index and the IES‐R. This survey was distributed across four pediatric solid organ transplant centers in North America. Basic demographics, clinician characteristics, and information regarding wellness and self‐care activities were collected. Descriptive and correlational analyses were performed.ResultsOne hundred and thirty five participants completed the survey, 76% were female and 78% were Caucasian. One‐third (34%) of participants endorsed burnout, while 43% reported professional fulfillment. Approximately 15% of respondents endorsed clinically significant levels of post‐traumatic stress symptoms related to patient deaths, with female clinicians more likely to endorse symptoms (p = .01). Nearly 80% of participants reported engaging in self‐care activities outside of work and only 10% of participants reported participation in hospital‐sponsored wellness programs.ConclusionsPediatric solid organ transplant team members exhibited moderate levels of burnout, professional fulfillment, and post‐traumatic stress. Female clinicians were the most likely to experience both work exhaustion and post‐traumatic stress symptoms. Transplant centers are encouraged to consider interventions and programming to improve clinician wellness.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/167846/1/petr14020.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/167846/2/petr14020_am.pd