Looking beyond the individual: How family demands and capabilities affect family adjustment following pediatric solid organ transplant.

INTRODUCTION: Better family adjustment following pediatric solid organ transplantation has been associated with a number of beneficial medical and psychosocial outcomes. Yet few studies have examined which pretransplant variables are associated with posttransplant family adjustment. This information can aid in identifying families that may need support going into the transplantation process and those who are at lower risk of worse posttransplant adjustment. METHOD: The sample included 66 parents of children with solid organ transplants and 22 children with solid organ transplants. Information regarding demographic factors, parent and child emotional functioning, and child social support was collected during the child's pretransplant evaluation and information on family adjustment was collected 6 months after transplantation. RESULTS: Results indicated that pretransplant demands such as worse parent and child emotional functioning were related to worse family adjustment 6 months after transplantation. Pretransplant capabilities (i.e., higher family income, parent education level, parent marital status, child social support) were not associated with posttransplant family adjustment. DISCUSSION: Pretransplant family demands such as parent and child emotional functioning, as opposed to family capabilities, should be assessed by family health care team members prior to transplantation because they may be related to worse family adjustment after the transplant. We offer recommendations for ways to assess and, if indicated, intervene upon pretransplant family demands in an effort to decrease the risk of worse posttransplant family adjustment. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

A preliminary investigation of sleep quality and patient-reported outcomes in pediatric solid organ transplant candidates.

The current cross-sectional, single-center study aimed to examine sleep quality in a sample of adolescents awaiting solid organ transplantation and to explore associations between sleep quality and both health-related quality of life and barriers to adherence. Thirty adolescents between the ages of 12 and 18 years (M age = 15.26, SD = 1.89) who were awaiting transplantation participated in this study. Participants completed measures of sleep quality, health-related quality of life, and barriers to adherence. T test and correlational analyses were performed to examine study aims. Adolescents awaiting transplantation had significantly lower levels of overall sleep quality compared to published norms of healthy peers. Domains of sleep quality were positively related to emotional and psychosocial health-related quality of life. Sleep quality domains were also negatively related to adherence barriers. This study provides preliminary evidence demonstrating that sleep quality among transplant candidates is compromised, and that poor sleep quality is related to adolescents' functioning across a number of domains during the pretransplant period. Results highlight the clinical importance of assessing and targeting sleep functioning in adolescents awaiting transplantation in order to reduce the negative influence of suboptimal sleep on functioning during this vulnerable period.

Multi-Site Comparison of Patient, Parent, and Pediatric Provider Perspectives on Transition to Adult Care in IBD.

PURPOSE: This multi-site study examines patient, parent, and pediatric provider perspectives on what is most important for successful transition. DESIGN AND METHODS: Using the Transition Readiness Assessment Questionnaire, 190 participants recruited from two pediatric IBD centers selected the top five skills they considered "most important for successful transition." Rankings were summarized and compared by group. RESULTS: While patients, parents, and clinicians all identified "calling the doctor about unusual changes in health" and "taking medications correctly and independently" as being important, each stakeholder group qualitatively and statistically differed in terms of transition readiness skills emphasized. Patients endorsed "calling the doctor about unusual changes in health" and "being knowledgeable about insurance coverage," as being most important to successful transition while parents emphasized health monitoring and problem solving. Pediatric providers emphasized adherence to treatment and reporting unusual changes in health. There were statistically significant differences in endorsement rates across participants for seven transition readiness skills. Patients agreed with providers 80% of the time and with their parents 40% of the time. Parent-provider agreement was 60%. CONCLUSIONS: Although there was some overlap across groups, areas of emphasis differed by informant. Patients emphasized skills they need to learn, parents emphasized skills they most likely manage for their children, and providers emphasized skills that directly impact their provision of care. PRACTICE IMPLICATIONS: Patient, parent, and provider beliefs all need to be considered when developing a comprehensive transition program. Failure to do so may result in programs that do not meet the needs of youth with IBD.

Multimethod Assessment of Medication Nonadherence and Barriers in Adolescents and Young Adults With Solid Organ Transplants.

Objective: To (a) examine levels of medication nonadherence in adolescent and young adult (AYA) solid organ transplant recipients based on AYA- and caregiver proxy-reported nonadherence to different medication types and the medication-level variability index (MLVI) for tacrolimus, and (b) examine associations of adherence barriers and AYA and caregiver emotional distress symptoms with reported nonadherence and the MLVI. Method: The sample included 47 AYAs (M age = 16.67 years, SD = 1.74; transplant types: 25% kidney, 47% liver, 28% heart) and their caregivers (94 total participants). AYAs and caregivers reported on AYAs' adherence barriers and their own emotional functioning. Nonadherence was measured with AYA self- and caregiver proxy-report and the MLVI for tacrolimus. Results: The majority of AYAs and caregivers denied nonadherence, with lower rates of nonadherence reported for antirejection medications. In contrast, 40% of AYAs' MLVI values indicated nonadherence to tacrolimus. AYAs and caregivers who verbally acknowledged nonadherence had more AYA barriers and greater caregiver emotional distress symptoms compared with those who denied nonadherence. AYAs with MLVIs indicating nonadherence had more barriers than AYAs with MLVIs indicating adherence. Conclusions: Multimethod nonadherence evaluations for AYA transplant recipients should assess objective nonadherence using the MLVI, particularly in light of low reported nonadherence rates for antirejection medications. Assessments should include adherence barriers measures, given associations with the MLVI, and potentially prioritize assessing barriers over gauging nonadherence via self- or proxy-reports. Caregiver emotional distress symptoms may also be considered to provide insight into family or environmental barriers to adherence.

Burnout in Nurses Working With Youth With Chronic Pain: A Pilot Intervention.

Objective: Nurse burnout is a significant issue, with repercussions for the nurse, patients, and health-care system. Our prior mixed-methods analyses helped inform a model of burnout in nurses working with youth with chronic pain. Our aims were to (a) detail the development of an intervention to decrease burnout; (b) evaluate the intervention's feasibility and acceptability; and (c) provide preliminary outcomes on the intervention. Method: In total, 33 nurses working on a pediatric inpatient care unit that admits patients with chronic pain conditions participated in the single-session 90-min groups (eight to nine nurses per group). The intervention consisted of four modules including (1) helping patients view pain as multifaceted and shift attention to functioning; (2) teaching problem-solving and reflective listening skills; (3) highlighting positives about patients when venting with coworkers; and (4) improving nurses own self-care practices. Measures provided assessment of feasibility, acceptability, and effectiveness at baseline and 3 months postintervention in a single group, repeated measures design. Results: Data support the feasibility and acceptability of the intervention. Pilot outcome results demonstrated improvements in the target behaviors of education on psychosocial influences, self-care, and venting to coworkers as well as self-compassion, general health, and burnout. There were no changes in pain beliefs or the target behaviors of focus on functioning, empathizing with patient, or highlighting positives. Conclusions: Our single-session tailored group treatment was feasible and acceptable, and pilot data suggest that it is beneficial, but a more comprehensive approach is encouraged to reduce burnout that might be related to multiple individual, unit, and system factors.

Maladaptive Coping and Depressive Symptoms Partially Explain the Association Between Family Stress and Pain-Related Distress in Youth With IBD.

Objective: To extend existing research on the pain burden experienced by youth with inflammatory bowel disease (IBD) by examining the complexity of psychosocial factors involved in pain-related distress. Methods: Parents completed measures of family stress and their child's pain-related expressions of distress and coping. Youth with IBD rated their depressive symptoms (n = 183 dyads). Mediation analyses were performed using regression-based techniques and bootstrapping. Results: Greater family stress was positively related to children's pain-related expressions of distress and passive coping. Significant indirect effects were found in the relationship between family stress and expressed pain-related distress through parent-reported passive coping, depressive symptoms, and both passive coping and depressive symptoms sequentially. Conclusions: Results suggest that family stress can place children at risk for greater expressed pain-related distress through effects on coping and depressive symptoms. Addressing psychosocial difficulties is important for closing the gap between disability and health in youth with IBD.

Transition readiness, adolescent responsibility, and executive functioning among pediatric transplant recipients: Caregivers' perspectives.

This study aimed both to evaluate caregivers' perspectives of EF and transition readiness among adolescent transplant recipients and to examine the indirect effects of adolescent responsibility and parent involvement across domains of EF. Fifty-seven caregivers of adolescent solid organ transplant recipients participated in this study and completed measures of adolescent EF, transition readiness, responsibility in healthcare behavior, and parent involvement. Bootstrapping procedures were used to test indirect effects. Caregiver report of adolescent EF was significantly related to transition readiness among transplant recipients. Significant indirect effects were found for adolescent responsibility but not parent involvement. No significant differences were found between metacognitive and behavioral regulation domains of EF in the association with transition readiness. Assessment of adolescent EF skills may help guide the development of individualized transition readiness guidelines to promote successful gains in self-management abilities as well as eventual transfer to adult medical services.

The interactive effect of parent personality and medication knowledge on adherence in children awaiting solid organ transplantation.

OBJECTIVE: The study aimed to examine parent personality factors as predictors of parent medication knowledge and parent-report of child medication adherence. METHOD: Seventy-eight parents (Mage = 37.68, 87.2% female) of children (Mage = 8.89, range: 0-20 years) undergoing evaluation for a solid organ transplant were recruited. Parents completed questionnaires about their personality, knowledge of their child's medications, and their child's level of medication adherence. RESULTS: Greater time since the child's diagnosis predicted lower levels of medication knowledge, while higher levels of Neuroticism and Extraversion predicted greater levels of medication knowledge. Greater medication knowledge predicted greater levels of medication adherence, with this effect being moderated by conscientiousness. Children of parents with low knowledge and low conscientiousness had the lowest levels of adherence. CONCLUSIONS: Parent personality is significantly related to medication knowledge and children's adherence prior to transplant. As parent personality is theoretically stable, Neuroticism (N), Extraversion (E), and Conscientiousness (C) serve as risk and protective factors that may influence medication knowledge and adherence even after transplantation. Parent medication knowledge and adherence are modifiable factors that would be appropriate targets for intervention during the pretransplant period. (PsycINFO Database Record

Pretransplant patient, parent, and family psychosocial functioning varies by organ type and patient age.

The goal of this study was to compare pretransplant patient HRQOL, parent psychological functioning, and the impact of the patient's ongoing illness on the family between organ types (ie, kidney, liver, heart) and age-groups (ie, children, AYAs). The sample included 80 pediatric patients with end-stage organ disease who were evaluated for transplantation and their parents. Parents completed self- and proxy reports at patients' pretransplant evaluations. Results indicated that patients evaluated for heart transplants consistently had lower HRQOL and their parents had greater psychological distress compared to the kidney and liver groups. Within the heart group, parents and families of children (<12 years old) experienced significantly more distress and impact of the patient's illness on the family compared to those of AYAs (≥12 years old). Pediatric patients awaiting heart transplants, particularly younger children, and their parents and families may have greater psychosocial needs compared to patients awaiting kidney or liver transplants.

Implementing psychological therapies for functional GI disorders in children and adults.

INTRODUCTION: Functional GI disorders (FGIDs) are common in adults and children. Psychological factors play an important role in the onset and maintenance of FGIDs and in explaining the associated disability. Psychological treatments such as Cognitive Behavioral Therapy and Hypnotherapy have been found efficacious in FGIDs but Integrating psychological treatments into traditionally medically-oriented care can be challenging. AREAS COVERED: This review outlines the case for integrating psychological therapies into medical care for FGIDs and examine various models of integrated care that can be adapted to fit specific practice scenarios. Expert commentary: We advise integrating a psychologist in the care and treatment planning of every patient. Clinic-specific needs dictate how integrated care for patients with FGIDs can be delivered.

Disease Activity Does Not Explain It All: How Internalizing Symptoms and Caregiver Depressive Symptoms Relate to Health-related Quality of Life Among Youth with Inflammatory Bowel Disease.

BACKGROUND: Health-related quality of life (HRQoL) is a multidimensional constructinfluenced by disease, individual, and environmental factors. Greater disease activity (DA) predicts poorer HRQoL, but disease status alone does not fully account for individual variability in HRQoL. This investigation tested the role of patient and caregiver internalizing symptoms in explaining the relationship between DA and patient HRQoL. METHODS: Participants included 83 subjects aged 11 to 18 diagnosed with inflammatory bowel disease and their caregiver. Patients reported on their HRQoL. Caregivers rated their own depressive symptoms and patients' internalizing symptoms (depression, anxiety, and somatization). Physicians rated DA. RESULTS: Greater DA was positively associated with subjects' internalizing symptoms and negatively associated with HRQoL. Mediation analyses found support for significant indirect effects on the relationship between DA and HRQoL through the subjects' internalizing symptoms, through their internalizing symptoms and caregivers' depressive symptoms, sequentially. CONCLUSIONS: Greater DA independently relates to poorer HRQoL. In addition, DA relates to greater child internalizing problems which in turn relate to higher levels of caregiver depressive symptoms and poorer HRQoL. Providers may consider a family-based approach to screen for internalizing problems, especially in patients with active disease, because caregiver and child mood symptoms may partially explain worsening child HRQoL.

Executive Functioning, Barriers to Adherence, and Nonadherence in Adolescent and Young Adult Transplant Recipients.

OBJECTIVE : To evaluate levels of executive functioning in a sample of adolescent and young adult (AYA) transplant recipients, and to examine executive functioning in association with barriers to adherence and medication nonadherence. METHOD : In all, 41 caregivers and 39 AYAs were administered self- and proxy-report measures. RESULTS : AYA transplant recipients have significant impairments in executive functioning abilities. Greater dysfunction in specific domains of executive functioning was significantly associated with more barriers to adherence and greater medication nonadherence. CONCLUSION : AYA transplant recipients are at increased risk for executive dysfunction. The assessment of executive functioning abilities may guide intervention efforts designed to decrease barriers to adherence and promote developmentally appropriate levels of treatment responsibility.

Providers' assessment of transition readiness among adolescent and young adult kidney transplant recipients.

The Readiness for Transition Questionnaire- provider version (RTQ-Provider) was developed to evaluate adolescent patients' transition readiness and healthcare behaviors from the perspective of the healthcare provider. The RTQ-Provider is a parallel version of the RTQ-Teen and RTQ-Parent completed by patients and parents. This study seeks to evaluate the psychometric properties of the RTQ-Provider and its utility as a clinical transition planning tool. Participants consisted of 49 kidney transplant recipients between the ages of 15 and 21. The RTQ-Provider was completed by the pediatric nephrologist and psychologist from the multidisciplinary healthcare team and compared to RTQ data from teens and parents. The RTQ-Provider demonstrated good-to-excellent internal consistency and interrater reliability. Construct validity was supported through significant predictive relationships between providers' perceptions of transition readiness and older patient age, increased patient healthcare responsibility, and decreased parent involvement in health care. By providing parallel teen, parent, and provider forms, the RTQ has the potential to foster open communication between patients, families, and healthcare team members regarding transition readiness. The study provides initial support for the RTQ-Provider as a clinical tool to assess providers' perceptions of transition readiness; however, future longitudinal research is needed to evaluate predictive validity following patients' transfer to adult care.

Intellectual and academic performance in children undergoing solid organ pretransplant evaluation.

Although prior research has shown lower intellectual functioning across pediatric solid organ transplant recipients relative to matched siblings or norm comparisons, few studies have assessed intellectual and academic performance prior to transplant across organ groups. The current data examine intellectual and academic functioning in children being evaluated for kidney, liver, or heart transplant. This investigation included intellectual and academic testing data from 195 children and adolescents between the ages of six and 19 yr evaluated for solid organ transplantation. Across organ groups, patients' intellectual functioning as estimated by the WASI/WASI-II at the time of pretransplant evaluation was within the average range, but lower compared to test norms. Patients demonstrated lower estimates of word reading, math computation, and spelling skills compared to the normal population, with the exception of heart patients' word reading and spelling skills and liver patients' spelling scores. Cognitive and academic impairments exist in children prior to transplantation. Findings emphasize the support that patients may require to manage the complicated medical regimen and succeed academically. Routine cognitive and academic assessment can inform healthcare providers regarding transplant patients' capacity to take on increasing medical responsibility and successfully reintegrate into the school environment.

The transition of health care responsibility from parents to youth diagnosed with chronic illness: a developmental systems perspective.

With improved health care, increasing numbers of children and adolescents with chronic illness and disability now live into adulthood. With this change, the health care community needs to address problems related to the transition from parents caring for their young children's needs to increasing health care responsibility being required of adolescents and young adults (AYA). The current article presents a conceptualization of relevant research related to the transition of health care responsibility from parent to AYA. Using a developmental systems perspective, representative literature on adolescent and dyad-level factors related to the transition of health care responsibility is reviewed to inform clinical practice and future intervention research. To identify the health care tasks that researchers have thus far considered as most important for successful transition, we review assessment measures in this area. The varying levels of agreement on transition of health care behaviors provide an index of current thought by experts in this field. Those behaviors consistently identified as key for successful transition of responsibility from parent to adolescent are outlined to inform future research and clinical practice.

Depressive symptoms in youth with inflammatory bowel disease compared with a community sample.

BACKGROUND: Previous investigations have produced mixed findings on whether youth with inflammatory bowel disease (IBD) experience elevated rates of depressive symptoms. Our first aim was to compare self-report of depressive symptoms by youth with IBD with a community sample. The second aim was to examine the relationship between symptoms of depression and measures of disease activity. METHODS: Item-level responses on the Children's Depression Inventory among a sample of 78 youth diagnosed with IBD were compared with responses from a community sample using 1-sample t-tests. Particular attention was given to items assessing somatic symptoms of depression given the potential overlap with IBD disease symptoms. The relationship between depressive symptoms and IBD disease activity was evaluated using Spearman's rank correlation coefficients and linear regression. RESULTS: Youth with IBD reported lower levels of depressive symptoms compared with the community sample on the Children's Depression Inventory Total Score, and similar or lower levels of difficulty on items assessing somatic symptoms. Most of the sample had inactive or mild disease activity at the time of participation, with 14% experiencing moderate/severe disease activity. Higher ratings of disease activity were related to greater depressive symptoms. Responses on somatic items from the Children's Depression Inventory were not differentially related to disease activity. CONCLUSIONS: As a group, pediatric patients with IBD did not experience the clinical levels of depressive symptoms or elevations in depressive symptoms when compared with a community sample. Somatic symptoms of depression do not differentiate youth with IBD experiencing elevations in disease activity from youth experiencing nonsomatic symptoms of depression.

Stability of Emotional and Behavioral Functioning in Youth with Inflammatory Bowel Disease.

This study prospectively examined stability of psychological and behavioral functioning in two matched cohorts of youth with inflammatory bowel disease (IBD): (1) newly-diagnosed and (2) previously-diagnosed patients. Youth and their parents completed measures of emotional and behavioral functioning at Time 1 and 6-months later. Mean-level analyses indicated that scores at Time 1 and Time 2 were within the nonclinical range. A significant decrease occurred in Internalizing symptoms for previously-diagnosed patients. Both groups demonstrated high levels of profile stability, with no significant differences across groups. Results suggest that emotional and behavioral functioning is generally stable without targeted intervention.

Dyadic confirmatory factor analysis of the inflammatory bowel disease family responsibility questionnaire.

OBJECTIVES: Evaluate the factor structure of youth and maternal involvement ratings on the Inflammatory Bowel Disease Family Responsibility Questionnaire, a measure of family allocation of condition management responsibilities in pediatric inflammatory bowel disease. METHODS: Participants included 251 youth aged 11-18 years with inflammatory bowel disease and their mothers. Item-level descriptive analyses, subscale internal consistency estimates, and confirmatory factor analyses of youth and maternal involvement were conducted using a dyadic data-analytic approach. RESULTS: Results supported the validity of 4 conceptually derived subscales including general health maintenance, social aspects, condition management tasks, and nutrition domains. Additionally, results indicated adequate support for the factor structure of a 21-item youth involvement measure and strong support for a 16-item maternal involvement measure. CONCLUSIONS: Additional empirical support for the validity of the Inflammatory Bowel Disease Family Responsibility Questionnaire was provided. Future research to replicate current findings and to examine the measure's clinical utility is warranted.

Assessment of family psychosocial functioning in survivors of pediatric cancer using the PAT2.0.

BACKGROUND: This study aimed to examine clinical validity and utility of a screening measure for familial psychosocial risk, the Psychosocial Assessment Tool 2.0 (PAT2.0), among pediatric cancer survivors participating in long-term survivorship care. METHODS: Caregivers (N=79) completed the PAT2.0 during their child's survivorship appointment. Caregivers also reported on family engagement in outpatient mental health treatment. Medical records were reviewed for treatment history and oncology provider initiated psychology consults. RESULTS: The internal consistency of the PAT2.0 total score in this survivorship sample was strong. Psychology was consulted by the oncology provider to see 53% of participant families, and families seen by psychology had significantly higher PAT2.0 total scores than families without psychology consults. PAT2.0 total scores and corresponding subscales were higher for patients, parents, and siblings enrolled in outpatient mental health services since treatment completion. Results were consistent with psychosocial risk categories presented within the Pediatric Psychosocial Preventative Health Model. Fifty-one percent of families presenting for survivorship care scored in the "universal" category, 34% scored in the "targeted" category, and 15% scored in the "clinical" category. CONCLUSIONS: Data indicate that the overall proportions of families experiencing "universal", "targeted", and "clinical" levels of familial distress may be constant from the time of diagnosis into survivorship care. Overall, the PAT2.0 demonstrated strong psychometric properties among survivors of pediatric cancer and shows promise as a psychosocial screening measure to facilitate more effective family support in survivorship care.

Health-related quality of life and perceived need for mental health services in adolescent solid organ transplant recipients.

The purpose of the current investigation was to assess interest in mental health services among parents of adolescent solid organ transplant recipients and the relationship between parent perceived need for mental health services and patient health-related quality of life (HRQOL). Sixty-three parents rated interest in receiving 10 mental health services, and patient HRQOL ratings were gathered from adolescent transplant recipients and their parents. Ninety-four percent of parents expressed some level of interest in at least one of the proposed services, with over 40 % indicating maximum interest. Parents' perceived need for mental health services was inversely related to adolescent and parent reports of HRQOL on the behavior, mental health, family cohesion, and parental impact-emotional domains. Results suggest that parents of adolescent solid organ transplant recipients are interested in receiving mental health services for their families. Assessment of need for mental health services and HRQOL may inform the medical team of families requiring intervention.