When Parents Request Nondisclosure: Rights of Adolescents to Access Their Health Information and Implications of the 21st Century Cures Act Final Rule.

AbstractDespite broad ethical consensus supporting developmentally appropriate disclosure of health information to older children and adolescents, cases in which parents and caregivers request nondisclosure continue to pose moral dilemmas for clinicians. State laws vary considerably regarding adolescents' rights to autonomy, privacy, and confidentiality, with many states not specifically addressing adolescents' right to their own healthcare information. The requirements of the 21st Century Cures Act have raised important ethical concerns for pediatricians and adolescent healthcare professionals regarding the protection of adolescent privacy and confidentiality, given requirements that chart notes and results be made readily available to patients via electronic portals. Less addressed have been the implications of the act for adolescents' access to their health information, since many healthcare systems' electronic portals are available to patients beginning at age 12, sometimes requiring that the patients themselves authorize their parents' access to the same information. In this article, we present a challenging case of protracted disagreement about an adolescent's right to honest information regarding his devastating prognosis. We then review the legal framework governing adolescents' rights to their own healthcare information, the limitations of ethics consultation to resolve such disputes, and the potential for the Cures Act's impact on electronic medical record systems to provide one form of resolution. We conclude that although parents in cases like the one presented here have the legal right to consent to medical treatment on their children's behalf, they do not have a corresponding right to direct the withholding of medical information from the patient.

Provider moral distress in caring for tracheostomy and ventilator dependent children: A single institution cross-sectional evaluation.

OBJECTIVE: To determine levels of moral distress in a pediatric unit caring for patients with tracheostomy/ventilator dependence. HYPOTHESIS: Moral distress will be significant in a dedicated pediatric trach/vent unit. METHODS: The Moral Distress Survey-Revised (MDS-R) is a 21-question survey measuring moral distress in pediatrics. The MDS-R was anonymously distributed to medical degree/doctor of osteopathy (MD/DOs), advanced practice practitioners (APPs), registered nurses (RNs), and respiratory therapists (RTs) in a unit caring for tracheostomy/ventilator dependent patients. Descriptive statistics, bivariate and multivariate analysis were performed. RESULTS: Response rate was 48% (61/127). Mean MDS-R score was 83 (range 43-119), which is comparable to reported levels in the pediatric intensive care unit (ICU). APPs had the highest median rate of moral distress (112, interquartile range [IQR], 72-138), while MD/DOs had the lowest median score (49, IQR, 43-77). RNs and RTs had MDS-R scores between these two groups (medians of 91 and 84, respectively). CONCLUSIONS: Moral distress levels in a unit caring for long term tracheostomy and ventilator dependent patients are high, comparable to levels in pediatric ICUs. APPs. APPs had higher levels of distress compared to other groups. This may be attributable to the constant stressors of being the primary provider for complex patients, especially in a high-volume inpatient setting.

A novel behavioral health program for family caregivers of children admitted to a transitional chronic ventilator unit.

BACKGROUND: The care of mechanically ventilated pediatric patients is complex and burdensome. It is essential to adequately support the family caregivers of these children to optimize outcomes; however, there is no literature describing interventions for caregivers in this population. RESEARCH QUESTION: This study described a novel behavioral health program and examined its impact on family caregiver engagement and psychological distress on a pediatric inpatient chronic ventilator unit. STUDY DESIGN AND METHODS: Electronic chart review was completed with retrospective and prospective participant enrollment for the purposes of longitudinal evaluation of caregiver engagement. For analytic purposes, participants were grouped into three categories: (1) preprogram, (2) postprogram, and (3) postprogram with completion of psychotherapy. RESULTS: The behavioral health program was associated with increased caregiver participation in rounds, t = 7.76, p = < .001. Parents who completed a course of psychotherapy within the behavioral health program demonstrated reduced time to training completion (F = 5.89; p < .01), higher staff-rated caregiver engagement (F = 3.69; p < .05), and significantly reduced levels of caregiver distress (t = 2.09; p < .05).

Executive functioning in pediatric cystic fibrosis: A preliminary study and conceptual model.

BACKGROUND: Research has shown that broad cognitive functioning in individuals with CF is intact. Specific executive functioning (EF) deficits have been identified, however, and adults with CF report more symptoms of ADHD than the general population. EF skills are critical to the management of a complex disease like CF although studies have not adequately examined EF mechanisms in CF. This manuscript (a) described EF in a small sample of children with CF, (b) summarized relations found between EF and psychosocial variables, and (c) presented a conceptual model by which to understand EF's impact on adherence in CF. METHODS: Data for this preliminary study were collected from 19 children with CF and their caregivers (ages, 6-18). Caregivers completed questionnaires assessing their child's physical and mental health, their own functioning, and overall family functioning. EF was measured using a parent-report rating scale. Patient health data were collected from the electronic medical record. RESULTS: This sample did not demonstrate elevated levels of EF impairment. Worse EF was related to poor family communication/cohesion, as well as higher treatment burden, worse lung function, poorer adherence, and older age. From these findings, a preliminary model was developed describing EF in the context of CF and adherence. CONCLUSIONS: Findings from this preliminary study suggest that the CF regimen and associated symptoms may overload otherwise adequate EF skills. Reducing disease burden and preventing burnout should be a focus of treatment. A better understanding of EF in CF and the impact on adherence would allow for better clinical management and effective design of interventions.

Preparing families to care for ventilated infants at home.

Advances in neonatal care have led to increased survival of infants with complex medical needs and technology dependence. Transition of the ventilator-dependent infant from hospital to home is a complex process that requires extensive coordination between the medical team and family. Home caregivers must be prepared to provide routine care for the ventilator-dependent child and respond to life-threatening emergencies. Families should be counseled on the need for home nursing, medical equipment and an adequate home environment to ensure a safe transition to home. Throughout the process, the family may require financial, social and psychological support. A structured education and transition process that is clearly communicated to parents is necessary to have an effective partnership with families.

Psychological predictors of nutritional adherence in adolescents with cystic fibrosis.

BACKGROUND & AIMS: The CF medical regimen is notoriously burdensome, comprised of respiratory treatments, oral medications, and nutritional demands. Adequate caloric intake has been identified as a challenge over the lifespan; however, we lack detailed information about nutritional adherence in teens, and the contextual drivers of these behaviors. Adolescence is a time of increased responsibility, reduced parental monitoring, and growing peer connections. There is no literature examining the impact of familial attitudes (e.g., privacy, disease disclosure) and the social milieu (e.g., friendships) on teen nutritional adherence behavior. We hypothesized that better teen nutritional adherence behaviors would be predicted by more favorable familial privacy attitudes, better relationship quality, and greater comfort in disease disclosure. METHODS: Assessment included questionnaires of caregiver privacy attitudes, relationship quality, and disease disclosure. Teens tracked PERT adherence for 1 month and logged daily caloric intake for 2 weeks. This produced detailed information on daily enzyme adherence, caloric intake, and eating frequency. RESULTS: Average PERT adherence, caloric intake, and eating frequency were suboptimal in this sample. More comfort in disease disclosure and less teen/mother discord predicted better PERT adherence. Higher caregiver privacy and lower teen closeness with friends predicted greater caloric intake and eating frequency. CONCLUSIONS: Results suggest that comfort in disease disclosure supports consistent PERT adherence across environments. Adolescents with close friendships may have less time for self-management (e.g., eating). Future research should collect more detailed information about friendships of teens with CF. Results suggest that daily structure and positive, appropriately supportive relationships should be encouraged by care teams.

Assessing psychosocial risk in pediatric cystic fibrosis.

BACKGROUND: Psychosocial risk factors are known to impact quality of life, treatment adherence, and health outcomes. No standardized comprehensive psychosocial risk screener is routinely utilized in cystic fibrosis (CF) care. The objectives of the study were to describe the range and severity of psychosocial risk within this CF population, investigate the reliability of a comprehensive psychosocial screener in pediatric CF clinical care, and explore relationships between psychosocial risk and key factors affecting health outcomes. It was hypothesized that the PAT-CF total and subscale α coefficients would be similar to those found in other pediatric medical populations. METHOD: Parents of 154 children with CF completed a CF-specific version of the Psychosocial Assessment Tool_All-lit (PAT-CF), an empirically-based psychosocial risk assessment, during routine CF clinical care. RESULTS: The internal consistency of the PAT-CF Total score was 0.71. Total score and subscale reliabilities reflect findings in other pediatric populations. Total risk scores fell in the following categories: 7% (Clinical-highest risk), 41% (Targeted), and 52% (Universal-lowest risk), respectively. Increased psychosocial risk was associated with Medicaid status and lower parent education, whereas having private insurance was associated with decreased psychosocial risk. CONCLUSIONS: The PAT-CF can feasibly be used as an empirically-based comprehensive psychosocial risk tool in routine CF care and is acceptable by parents. In addition to providing universal anticipatory guidance regarding child and family wellness, early identification of risk factors allows care teams to proactively provide targeted support and intervention for specific psychosocial risk factors to promote improved quality of life and ability to sustain daily care.

Caregiver Daily Experiences Associated with Child Asthma Symptoms.

OBJECTIVE: In this study, we used ecological momentary assessment (EMA) delivered via smart- phones to determine how the daily experiences (comfort in neighborhood, ability to manage child's asthma, positive/negative affect) of 59 caregivers (90% African-American/black) living in an urban setting are associated with asthma symptoms in children ages 7-12 years (M = 9.56 years). METHODS: Caregivers and their children with asthma completed a baseline research ses- sion, followed by 14 days of EMA surveys completed on smartphones. EMA enables researchers to examine within-person processes while preserving the ecological validity of the data and re- ducing retrospective recall bias. RESULTS: On days when caregivers reported more child asthma symptoms, they also reported feeling less comfortable in their neighborhoods and less able to control their child's asthma at home. Baseline reports of caregiver quality of life were also associ- ated with child asthma symptoms. CONCLUSIONS: Findings highlight the need for researchers and clinicians to recognize that both asthma (ie, ability to control asthma) and non-asthma related factors (ie, factors related to neighborhoods) may be associated with caregivers' perceptions of their children's asthma symptoms. Perceptions of child symptoms have important consequences for daily asthma care, including decisions related to healthcare utilization.

The influence of comorbid asthma on the severity of symptoms in children with attention-deficit hyperactivity disorder.

OBJECTIVE: The current study examined the association between asthma and attention-deficit hyperactivity disorder (ADHD) symptoms in a clinical pediatric sample. METHODS: Demographic and neuropsychological data for children with a billing diagnosis of ADHD were extracted from a clinical database. Families completed standard rating scales. Seventy-one patients with a co-morbid asthma diagnosis were identified and matched by age to a group of 71 patients with only ADHD. RESULTS: Children with asthma and ADHD were more likely to display clinically elevated levels of hyperactivity, externalizing behaviors, anxiety, and hyperactive/impulsive behaviors compared to children with ADHD alone. Boys with asthma and ADHD had more symptoms than boys with only ADHD of somatization and emotional internalizing, while girls with asthma and ADHD had more symptoms of hyperactivity/impulsivity, conduct problems, anxiety, and emotional internalizing compared to girls with only ADHD. CONCLUSIONS: Findings suggest that in children with ADHD, co-morbid asthma is associated with increased behavioral and internalizing symptoms, with distinct gender differences present. Increased behavioral and internalizing symptoms seen in children with both asthma and ADHD may be due to the burden of their medical condition. No difference was found on cognitive variables, suggesting chronic hypoxia may be less influential in explaining these differences. Future research should determine the specific mechanisms of these differences.

Acculturation and quality of life in urban, African American caregivers of children with asthma.

OBJECTIVE: Racial/ethnic minority caregivers of children with asthma are at risk for low levels of quality of life (QOL). Limited research has identified factors that contribute to lower QOL among African American caregivers. This study examined associations between acculturation (e.g., engaging in values/beliefs traditional of one's culture versus adopting mainstream cultural views) and caregiver QOL in low-income, urban African American families of children (7-12 years) with persistent asthma. We also investigated the association between caregiver QOL and child emergency department (ED) use. METHODS: Fifty-five caregivers and their children completed interview-based questionnaires in a single research session. Caregivers completed the Pediatric Asthma Caregiver Quality of Life Questionnaire (PACQLQ), the African American Acculturation Scale-Revised (AAAS-R), and reported on child asthma variables. Children completed items assessing asthma control. RESULTS: Higher overall QOL and emotional function subscale scores were associated with more traditional African American religious beliefs/practices (r = .288, p = .033; r = .333, p = .013). Higher emotional function subscale scores were associated with more traditional values of African American families (r = .306, p = .023). Lower QOL was found among caregivers of children who had visited the ED three or more times in the last year. CONCLUSIONS: Less acculturation tied to religious beliefs/practices and family values (as measured by the AAAS-R) may serve a protective role in reducing the burden low-income, urban African American caregivers experience in managing child asthma. This study is the first of its kind to study acculturation in African American caregivers of children with asthma.

Disease disclosure in individuals with cystic fibrosis: Association with psychosocial and health outcomes.

BACKGROUND: This study aimed to quantify cystic fibrosis (CF) disclosure and examine associations between disclosure and psychosocial and health outcomes. METHODS: Participants completed measures assessing disease disclosure and psychosocial outcomes. Data from chart reviews and pharmacy records were obtained. RESULTS: Participants (N=128; ages 16-63) were more likely to disclose to romantic partners (97%) and close friends (94%) than to casual friends (79%), bosses (71%), or co-workers (53%). Participants reported more comfort discussing CF with and doing treatments in front of romantic partners and close friends than other groups. Disclosure was associated with higher social support, social functioning, and medication adherence self-efficacy. Lower lung-function was associated with disclosure to bosses and co-workers. CONCLUSIONS: Clinicians should consider discussing disclosure with patients, as limited disclosure may have a negative impact on psychosocial outcomes.

Health disparities among youth with type 1 diabetes: A systematic review of the current literature.

INTRODUCTION: Research in pediatric Type 1 diabetes (T1D) has reliably identified differences in health outcomes based on race/ethnicity and socioeconomic status (SES). Racial/ethnic minority and/or low-SES youth consistently display poorer physical health and psychological functioning than racial/ethnic majority and higher-SES youth. The purpose of this review is to better understand health disparities in T1D by race/ethnicity and SES, and to provide recommendations for researchers based on these findings. METHODS: Articles were obtained from PsycINFO, PubMed, and Web of Knowledge with search terms: "Type 1 diabetes," "ethnic," "pediatric," "race/ethnicity," "race," "socioeconomic status," "SES," and "income." Criteria for inclusion were (a) Type 1 diabetes cases, (b) child or adolescent samples, (c) information about health or psychosocial outcomes grouped by race/ethnicity or SES, (d) no intervention data, (e) peer-reviewed, (f), English-language, and (g) published in an academic journal. RESULTS: Twenty-seven articles reported on health outcomes and 4 articles reported on psychosocial outcomes. Across 16 studies, racial/ethnic minority youth displayed higher HbA1c levels compared to Caucasian youth. Eighteen studies reported that lower-SES youth had higher HbA1c levels than higher-SES youth. Four studies found racial/ethnic minority youth and lower-SES youth had poorer psychological functioning than Caucasian youth or higher-SES youth. DISCUSSION: Findings from our review suggest an association between race/ethnicity, SES, and health outcomes in pediatric T1D. Researchers should consider developing interventions that take into account factors which may place children from racial/ethnic minority and lower-SES backgrounds at risk for poor metabolic control and emotional functioning. Future research should examine causative mechanisms of health disparities.

Quality of Life in Children With Asthma: A Developmental Perspective.

OBJECTIVE: The current study investigated whether factors associated with quality of life (QOL) in children with asthma (e.g., family functioning, asthma routines, asthma severity) differed by child age. METHODS: Participants included 192 children with asthma (5-12 years) and their caregivers. Both children and caregivers completed questionnaires at an initial research session. Family functioning was determined from a mealtime observation that occurred in family homes. RESULTS: Child age moderated the association between asthma severity and child QOL and between routine burden and QOL in children with asthma. Post hoc probing analyses revealed that among older children, QOL levels were lower in the presence of worse asthma severity and more routine burden. CONCLUSIONS: Findings suggest that associations between asthma severity, routine burden, and QOL may differ by child age. Treatment programs and health-care recommendations addressing QOL in children with asthma may need to be tailored to address differences in factors associated with QOL by child age.

Family Functioning and Treatment Adherence in Children and Adolescents with Cystic Fibrosis.

Background: Cystic fibrosis (CF) is one of the most challenging pediatric illnesses for families to manage. There is, however, limited research that considers the associations between family functioning and treatment adherence in children and adolescents with CF. Methods: Nineteen children with CF (mean age=12.42 years, mean forced expiratory volume in one second (FEV1)=90.9% predicted) and their families participated in the study. Caregiver and child participants completed interview-based assessments and were then videotaped during a family mealtime. Results: Mean scores on several domains of family functioning fell in the "unhealthy" range. Better family functioning was found among older children. Better family functioning was also associated with better adherence to antibiotic treatment and worse adherence to enzymes. Conclusions: Findings suggest that family functioning may be an important correlate of treatment adherence in children and adolescents with CF. Future research should replicate these findings in larger samples of children and adolescents with CF.