Parent communication with care teams and preparation for family meetings in the paediatric cardiac ICU: a qualitative study.

OBJECTIVE: The paediatric cardiac ICU presents unique challenges to optimal communication practices, which may impact participation in medical decision-making and long-term psychosocial outcomes for families. This study characterised parent perceptions of (1) team practices that impeded or facilitated communication and (2) preparation for family meetings with interprofessional care teams during extended cardiac ICU admissions. METHODS: A purposive sample of parents of children admitted to the cardiac ICU was selected to participate in interviews about their communication experiences. Data were analysed using a grounded theory approach. RESULTS: Twenty-three parents of 18 patients participated with an average length of stay of 55 days at the time of interview. Team practices that impeded communication included inaccurate/incomplete communication, inconsistent within team communication/coordination, and feeling overwhelmed by too many team members/questions. Team practices that facilitated communication included valuing parent preferences, provider continuity, explaining jargon, and eliciting questions. Preparation for family meetings included team practices, parental preferences, and experiences when learning about family meetings (including apprehension about meetings). Family meetings were described as valued opportunities to improve communication. CONCLUSION: Communication with medical teams represents a modifiable determinant of long-term outcomes for families of children in the cardiac ICU. When parents are included as valued members of their child's care team, they are more likely to feel a sense of control over their child's outcomes, even in the face of prognostic uncertainty. Family meetings represent an important opportunity to repair fractures in trust between families and care teams and overcome barriers to communication between parties.

A Psychosocial Care Model for Families Affected by Congenital Heart Disease.

OBJECTIVES: To develop a model of family-based psychosocial care for congenital heart disease (CHD). DESIGN: Qualitative study using crowdsourced data collected from parents of young children with CHD who received care across 42 hospitals. SETTING: Yammer, a social networking platform used to facilitate online crowdsourcing and qualitative data collection. SUBJECTS: Geographically diverse sample of 100 parents (72 mothers and 28 fathers) of young children with CHD. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Parents joined a private group on Yammer and responded to 37 open-ended study questions over a 6-month period. Qualitative data were coded and analyzed using an iterative process. Three broad themes corresponding to pillars of family-based psychosocial care were identified: pillar 1) parent partnership in family-integrated medical care, pillar 2) supportive interactions focused on parent and family wellbeing, and pillar 3) integrated psychosocial care and peer support for parents and families. Each pillar was supported by subthemes corresponding to specific intervention strategies. Most parents described the need for intervention strategies across multiple pillars, with almost half reporting needs across all three pillars of psychosocial care. Parents' preferences for psychosocial support changed over time with changes to their child's medical status and across care settings (e.g., hospital, outpatient clinic). CONCLUSIONS: Results support a model of family-based psychosocial care that is multidimensional and flexible to meet the needs of families affected by CHD. All members of the healthcare team play an important role in providing psychosocial support. Future research incorporating components of implementation science is needed to promote uptake of these findings, with the goal of optimizing family-based psychosocial support in the hospital setting and beyond.

Experiences of fetal care, social support, and emotional functioning during the COVID-19 pandemic in women carrying a fetus with CHD.

OBJECTIVE: To explore how the COVID-19 pandemic affected fetal care, social support, and emotional functioning for women carrying a fetus with CHD. METHOD: This was a single-centre qualitative study of 31 women who received a prenatal diagnosis of CHD during the pandemic. Patients completed semi-structured interviews about their experiences with fetal care, social support, and perceptions of risk to themselves and their fetus. Consistent themes regarding the impact of the pandemic were identified using an inductive thematic approach. Demographic data were collected via self-report and chart review. RESULTS: Women generally reported consistent access to fetal care throughout the pandemic, with frequent use of telemedicine in addition to in-person care, but negative impacts resulting from restrictions on family support at appointments. Limited access to social support overall and a loss of pregnancy traditions were described. Many women reported feeling isolated and experiencing worries and fears about COVID-19 but also noted feeling supported by their healthcare team. Partner/family support during appointments and connection to peer-to-peer support were identified as recommendations to mitigate negative impacts. CONCLUSION: Women carrying a fetus with CHD during the COVID-19 pandemic experienced unique stressors that may affect mental health. However, many also experienced unexpected supports that may mitigate effects of pandemic-related stressors. Results can inform efforts to promote positive family outcomes during and following the COVID-19 pandemic.

Meeting Parents' Needs for Education and Preparation following Congenital Heart Disease Diagnosis: Recommendations from a Crowdsourced Study.

OBJECTIVE: This article characterizes the educational needs of parents following fetal or neonatal congenital heart disease (CHD) diagnosis and generates recommendations for meeting these needs. STUDY DESIGN: Online crowdsourcing methods were used to collect qualitative data from 95 parents of children with CHD regarding their needs for education and preparation following fetal or neonatal diagnosis. Data were analyzed using qualitative methods and themes were organized around the substructure of met and unmet needs. RESULTS: Two themes represented consistently met needs, whereas 10 themes represented needs that were either inconsistently met or consistently unmet. Parents reported needing more information about social, emotional, and financial supports, preparation for long-term care, and guidance toward reputable online resources. Parents also provided recommendations for meeting these needs. CONCLUSION: Parents' needs for education and preparation following CHD diagnosis are much broader in scope than what they currently receive. Addressing these may support parental coping and active participation in medical decision-making. KEY POINTS: · CHD counseling after diagnosis may provide opportunities to promote parents' mental health.. · Guidelines recommend that this counseling should include emotional and decision-making support, however, it is unclear what parents actually receive.. · This study found that parents' needs for education and preparation following CHD diagnosis are much broader in scope than what they currently receive..

Parent Perspectives on Family-Based Psychosocial Interventions for Congenital Heart Disease.

OBJECTIVES: To identify parents' preferences for goals and structure of intervention programs to support the psychosocial needs of families impacted by congenital heart disease (CHD). STUDY DESIGN: Information about parent priorities for psychosocial programs was obtained in this mixed-methods study conducted at a pediatric hospital in the Mid-Atlantic region of the US. Participants were parents (N = 34; 20 mothers, 14 fathers) of children with CHD between the ages of 1 and 3 years who had cardiac surgery at less than 6 months of age. Qualitative data were excerpts from semistructured interviews. Quantitative data were participant choices regarding their ideal psychosocial program resulting from a card sort. RESULTS: Parents reported that psychosocial interventions should support partnership in their child's care, promote self-care, facilitate communication with providers, prepare parents for challenges after hospitalization, provide education about child neurodevelopment, and help parents engage social support. Parents reported needing formalized support across care, brief intervention models, in-person individualized or small group support, and involvement of multidisciplinary providers and peer mentors in the delivery of interventions. CONCLUSIONS: Parents of children with CHD need psychosocial interventions that empower them to act as primary caregivers and effective advocates for their child. Individualized, formalized, and multidisciplinary approaches to psychosocial care are necessary to best accommodate the dynamic stressors related to parenting a child with CHD and may mitigate the impact of parent mental health problems on child outcomes.

Supporting parenting during infant hospitalisation for CHD.

OBJECTIVE: To characterise the parenting priorities of mothers and fathers of infants hospitalised with CHD and generate recommendations to support parenting during infant hospitalisation. STUDY DESIGN: Through online crowdsourcing, an innovative research methodology to create an online community to serve as a research sample, 79 parents of young children with CHD responded to questions about parenting during hospitalisation via private social networking site. Responses were analysed using qualitative research methods. RESULTS: Three broad themes were identified: (1) establishing a bond with my baby, (2) asserting the parental role, and (3) coping with fear and uncertainty. Parents value provider support in restoring normalcy to the parenting experience during infant hospitalisation. CONCLUSIONS: Care teams can support parenting during infant hospitalisation by promoting parents' roles as primary caretakers and decision-makers and attending to the emotional impact of infant hospitalisation on the family.

Partnering With Stakeholders to Inform the Co-Design of a Psychosocial Intervention for Prenatally Diagnosed Congenital Heart Disease.

Input from diverse stakeholders is critical to the process of designing healthcare interventions. This study applied a novel mixed-methods, stakeholder-engaged approach to co-design a psychosocial intervention for mothers expecting a baby with congenital heart disease (CHD) and their partners to promote family wellbeing. The research team included parents and clinicians from 8 health systems. Participants were 41 diverse parents of children with prenatally diagnosed CHD across the 8 health systems. Qualitative data were collected through online crowdsourcing and quantitative data were collected through electronic surveys to inform intervention co-design. Phases of intervention co-design were: (I) Engage stakeholders in selection of intervention goals/outcomes; (II) Engage stakeholders in selection of intervention elements; (III) Obtain stakeholder input to increase intervention uptake/utility; (IV) Obtain stakeholder input on aspects of intervention design; and (V) Obtain stakeholder input on selection of outcome measures. Parent participants anticipated the resulting intervention, HEARTPrep, would be acceptable, useful, and feasible for parents expecting a baby with CHD. This model of intervention co-design could be used for the development of healthcare interventions across chronic diseases.

Parental reactions to children's negative affect: The moderating role of parental GAD.

The impact of parental anxiety disorders has been explored in broad categories of parenting behaviors; however, less is known about the impact of parental anxiety on emotion socialization behaviors. The current study tested the conditional effect of parental Generalized Anxiety Disorder (GAD) on one aspect of emotion socialization, parents' reactions to their child's negative affect. Participants were 89 children between ages 3 and 12 and their parents, from a community sample. Parents completed the Anxiety Disorders Interview Schedule-IV (ADIS-IV), an interaction task with their child, and the Beck Anxiety Inventory-II (BAI-II). Overall, the data supported study hypotheses. Parental GAD moderated the relationship between child's negative affect and parental over control and emotional discouragement. Specifically, children's negative affect was positively related to parental emotional discouragement for parents with GAD, but not for parents without a diagnosis. Conversely, children's negative affect was not predictive of parental overcontrol for parents with GAD, but increases in children's negative affect did predict increases in parental overcontrol for parents without a diagnosis. The present findings suggest parents diagnosed with GAD are discouraging of their children's emotional experiences and fail to adjust their level of guidance throughout situations which induce negative affect, leaving children to cope with negative emotions on their own.

Intolerance of uncertainty in children with attention-deficit/hyperactivity disorder.

Intolerance of uncertainty (IU) has often been studied in the context of internalizing disorders, but no studies to our knowledge have explored the relation between IU and externalizing disorders. Given the proposed link between IU and emotion regulation, the current study sought to examine levels of IU in an externalizing clinical population with known emotion regulation difficulties-attention-deficit/hyperactivity disorder (ADHD). IU levels in this population were compared to a clinical population known to experience elevated levels of IU. Participants in present study were ninety-three children (36 anxiety disorder, 28 ADHD, 29 unaffected children) ages 7-13, who completed the Intolerance of Uncertainty Scale-Short Version (IUS). Responses on the IUS were converted to total IU, prospective IU, and inhibitory IU. A linear mixed model analysis of covariance was conducted while controlling for age, sex, and ADHD medications. A significant interaction was observed between diagnostic status and IU scale. Planned contrasts indicated that children with anxiety disorders and ADHD reported significantly higher levels of IU relative to unaffected children, and children with ADHD reported comparable levels of inhibitory IU relative to children with anxiety disorders. The current results contribute to a growing literature on the link between IU and psychopathology. IU appears to be a transdiagnostic construct present among children with internalizing and externalizing disorders, and may be broadly associated with emotion regulation deficits rather than specific disorder symptoms.

Emotional reactivity and executive control: A pathway of risk for the development of childhood worry.

Though risk factors associated with the development of anxiety have been examined, less is known about childhood worry. Current literature suggests that adult worriers may be more likely to avoid increases in negative affect (emotional contrast avoidance), and less likely to effectively regulate their emotions. The current study tested a mediational model to examine the role of emotional and attentional control in the relation between emotional reactivity and child worry. Participants were 99 children between 7 and 10 years old, and their parents, from a community sample. Parents completed measures of child temperament and executive function, and children completed a measure of worry. Overall the data supported the study hypotheses. Child temperaments rated as low in soothability were significantly related to higher worry symptoms. Attentional shift and emotional control acted as serial mediators in the relation between temperament and worry, and fully mediated the relation. These findings suggest a model for the development of childhood worry that combines emotional contrast avoidance and emotional dysregulation.