Mental Health Symptoms in Parents of Infants 3 Months After Discharge Following Neonatal Cardiac Surgery.

BACKGROUND: Parents of newborns with congenital heart disease (CHD) are at risk for anxiety, depression, and post-traumatic stress. Few studies have examined whether modifiable factors that influence parents' mental health after discharge are present during postoperative care in the pediatric cardiac intensive care unit (PCICU). OBJECTIVE: To describe mental health symptoms of parents of infants with CHD 3 months after PCICU discharge and to determine factors during the PCICU stay that are predictors of such symptoms. METHODS: A longitudinal cohort pilot study of 56 parents (28 mother-father dyads) of 28 infants with CHD. During the first postoperative week after cardiac surgery, parents completed questionnaires measuring factors potentially influencing mental health. Three months after discharge, 42 parents of 22 infants completed validated measures of anxiety, depression, and posttraumatic stress. RESULTS: Three months after discharge, 26% of parents had clinically elevated levels of anxiety symptoms, 21% had clinically significant levels of depressive symptoms, and 19% had posttraumatic stress symptoms. In multi-variable analysis, parental role alteration in the PCICU was predictive of anxiety (P = .002), depressive (P = .02), and posttraumatic stress (P = .02) symptoms 3 months after discharge. Higher education level was predictive of anxiety symptoms (P = .009). Postnatal CHD diagnosis was predictive of posttraumatic stress symptoms (P = .04). CONCLUSIONS: Parental role alteration perceived by parents during the PCICU stay is a modifiable stressor contributing to adverse mental health symptoms 3 months after discharge. Interventions targeting parental role alteration in the PCICU are critically needed.

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.

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..

Coping strategies used by mothers and fathers following diagnosis of congenital heart disease.

BACKGROUND: Parents of children with congenital heart disease (CHD) exhibit high rates of mental health difficulties, which can influence child developmental and behavioural outcomes. While extensive research has focused on CHD-related stressors that contribute to parental mental health difficulties, few studies have investigated parental coping strategies that may mitigate or heighten risk. This study aimed to identify parental coping strategies following diagnosis of CHD and compare use of coping strategies among different groups (mothers vs. fathers; prenatal vs. postnatal diagnosis). METHODS: A diverse sample of 34 parents (20 mothers and 14 fathers) of young children with CHD participated in semistructured interviews focused on their responses to CHD-related stressors. Coping strategies were identified from qualitative data and categorized according to the COPE Inventory, an instrument that assesses common adult responses to stress. Coping strategies deemed as unique to parenting a critically ill child were identified. χ2 and independent sample t tests evaluated group differences. RESULTS: Parents described using between 1 and 10 different adaptive and maladaptive strategies measured by the COPE Inventory. Most parents (82.35%) also described coping strategies that may be unique to parenting a critically ill child. Mothers were more likely than fathers to report a focus on and venting of emotions (70% vs. 21.43%) and behavioural disengagement (25% vs. 0%). Compared with parents receiving a postnatal CHD diagnosis, those receiving a prenatal diagnosis described a greater variety of coping strategies (6.23 vs. 4.52) and more often reported positive reinterpretation and growth (69.23% vs. 14.29%), behavioural disengagement (38.46% vs. 0%) and denial (38.46% vs. 0%). CONCLUSIONS: Parents of children with CHD utilize a variety of coping strategies, some of which are maladaptive. Interventions tailored to the needs of mothers and fathers of young children with CHD, including those receiving a postnatal diagnosis, are needed to promote adaptive coping and optimize family psychosocial outcomes.

Role alteration predicts anxiety and depressive symptoms in parents of infants with congenital heart disease: a pilot study.

BACKGROUND: Parents of infants born with critical congenital heart disease are at risk for adverse mental health symptoms. The purpose of this study was to identify infant-, parent-, and environmental-based stressors for mothers and fathers after their infants' cardiac surgery, and to explore relationships between stressors and mental health symptoms of anxiety and depression. METHODS: This study enrolled 28 biological mother-father dyads from families admitted to the paediatric cardiac intensive care unit for cardiac surgery at one free-standing children's hospital in the Northeast. Paired t-tests were used to examine group differences between mothers and fathers on perceived stressors and mental health symptoms, while linear mixed effects modelling was used to explore the predictive relationship between perceived stressors, personal factors, and mental health symptoms. RESULTS: Mothers reported higher perceived stressor scores of parental role alteration (t = 4.03, p < 0.01) and infant appearance and behaviour (t = 2.61, p = 0.02), and total perceived stress (t = 2.29 p = 0.03), compared to fathers. Mothers also reported higher anxiety (t = 2.47, p = 0.02) and depressive symptoms (t = 3.25, p < 0.01) than fathers. In multivariable analysis, parental role alteration significantly predicted anxiety (t = 5.20, p < 0.01, d = 0.77) and depressive symptoms (t = 7.09, p < 0.01, d = 1.05) for mothers and fathers. The consensus subscale of the Dyadic Adjustment Scale also significantly predicted depressive symptoms (t = -2.42, p = 0.02, d = 0.04). CONCLUSION: Parents were distressed during their infant's admission for surgical repair for critical congenital heart disease. Parental role alteration was significantly associated with parental anxiety and depressive symptoms, while poor relationship quality was associated with depressive symptoms, highlighting areas for potential nursing-led psychosocial led interventions.

Parental role alteration strongly influences depressive symptoms in mothers of preoperative infants with congenital heart disease.

BACKGROUND: Mothers of infants with congenital heart disease are at risk for depression. OBJECTIVES: This study explored the influence on maternal depressive symptoms of several known factors for mothers in the pediatric cardiac intensive care unit, including perceived stressors, attachment, and anxiety. METHODS: This study was a secondary analysis of 30 mothers of infants awaiting cardiac surgery. Linear regressions were calculated to determine the relationships between perceived stressors, maternal attachment, anxiety, and maternal depressive symptoms. RESULTS: Nearly half of mothers reported depressive symptoms above the measure cut-off score, indicating they were at risk for likely clinical depression. Subscales of perceived stress explained 61.7% of the variance in depressive symptoms (F = 11.815, p<0.0001) with parental role alteration subscale as the strongest predictor (standardized beta=0.694, p = 0.03). CONCLUSIONS: Findings underscore the importance of mental health screening and instituting nursing practices to enhance parental role for mothers of infants awaiting cardiac surgery.

Skin-to-Skin Care is Associated with Reduced Stress, Anxiety, and Salivary Cortisol and Improved Attachment for Mothers of Infants With Critical Congenital Heart Disease.

OBJECTIVE: To estimate the effect of skin-to-skin care (SSC) on biobehavioral measures of stress (anxiety and salivary cortisol) and attachment (attachment scores and salivary oxytocin) of mothers before and after their infants' neonatal cardiac surgery. DESIGN: A prospective interventional, baseline response-paired pilot study. SETTING: Cardiac center of a large, metropolitan, freestanding children's hospital. PARTICIPANTS: Thirty women whose infants were hospitalized for neonatal cardiac surgery. METHODS: Participants acted as their own controls before, during, and after SSC at two time points: once before and once after surgery. We measured the stress response of mothers, as indicated by self-reported scores of anxiety and maternal salivary cortisol, and maternal-infant attachment, as indicated by self-reported scores and maternal salivary oxytocin. RESULTS: Significant reductions in self-reported scores of anxiety and salivary cortisol were found as a result of SSC at each time point, as well as increased self-reported attachment. No significant differences were found in oxytocin. CONCLUSION: Our findings provide initial evidence of the benefits of SSC as a nurse-led intervention to support maternal attachment and reduce physiologic and psychological stress responses in mothers of infants with critical congenital heart disease before and after neonatal cardiac surgery.

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.

Skin-to-Skin Care Is a Safe and Effective Comfort Measure for Infants Before and After Neonatal Cardiac Surgery.

OBJECTIVES: To determine the effect of skin-to-skin care on stress, pain, behavioral organization, and physiologic stability of infants with critical congenital heart disease before and after neonatal cardiac surgery. DESIGN: A baseline response-paired design was used, with infants acting as their own controls before, during, and after skin-to-skin care at two distinct time points: once in the preoperative period (T1) and once in the postoperative period (T2). SETTING: Cardiac ICU and step-down unit in a large metropolitan freestanding children's hospital. SUBJECTS: Convenience sample of 30 infants admitted preoperatively for critical congenital heart disease. INTERVENTIONS: Eligible infants were placed into skin-to-skin care for 1 hour with their biological mothers once each at T1 and T2. MEASUREMENTS AND MAIN RESULTS: Measurements of stress (salivary cortisol), pain and behavior state (COMFORT scale), and physiologic stability (vital signs) were assessed immediately before skin-to-skin care, 30 minutes into skin-to-skin care, and 30 minutes after skin-to-skin care ended.At both T1 and T2, infant pain scores were significantly decreased (p < 0.0001) and infants moved into a calmer behavior state (p < 0.0001) during skin-to-skin care as compared to baseline. At T1, infants also had significantly reduced heart rate (p = 0.002) and respiratory rate (p < 0.0001) and increased systolic blood pressure (p = 0.033) during skin-to-skin care. At both T1 and T2, infant cortisol remained stable and unchanged from pre-skin-to-skin care to during skin-to-skin care (p = 0.096 and p = 0.356, respectively), and significantly increased from during skin-to-skin care to post-skin-to-skin care (p = 0.001 and p = 0.023, respectively). Exploratory analysis revealed differences in cortisol reactivity for infants with higher baseline cortisol (> 0.3 µg/dL) versus lower (≤ 0.3 µg/dL) prior to skin-to-skin care. Infants with higher baseline cortisol at T2 experienced significantly reduced cortisol during skin-to-skin care (p = 0.025). No significant differences in demographics or baseline variables were found between infants in either group. CONCLUSIONS: Skin-to-skin care is a low-cost, low-risk intervention that promotes comfort and supports physiologic stability in infants before and after neonatal cardiac surgery.

Fathers of Children With Congenital Heart Disease: Sources of Stress and Opportunities for Intervention.

OBJECTIVES: To examine sources of stress for fathers of children with congenital heart disease and opportunities for intervention to prevent or reduce paternal mental health problems. DESIGN: Qualitative study using online crowdsourcing, an innovative research methodology to create an online community to serve as a research sample. SETTING: Yammer, an online social networking site. SUBJECTS: Geographically diverse sample of 70 parents (25 fathers and 45 mothers) of young children with congenital heart disease. INTERVENTIONS: Participants 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, and themes regarding sources of stress for fathers of children with congenital heart disease and opportunities for intervention were identified. MEASUREMENTS AND MAIN RESULTS: Four broad themes regarding sources of stress for fathers of children with congenital heart disease emerged from the qualitative data from both mothers and fathers: societal expectations for fatherhood and standards of masculinity, balancing work and family responsibilities, feeling overlooked as a partner in care, and lack of father supports. To begin to address these sources of stress, participants recommended that care teams acknowledge and normalize the impact of congenital heart disease on fathers, provide support for balancing work and family responsibilities, recognize and promote father knowledge and engagement, and provide formal and informal supports for fathers of children with congential heart disease. CONCLUSIONS: Fathers of children with congenital heart disease experience unique sources of stress in the absence of targeted interventions to meet their needs. Care teams play an important role in acknowledging the experiences of fathers and including and engaging fathers in care.

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.

Social Risk Factors Impact Hospital Readmission and Outpatient Appointment Adherence for Children with Congenital Heart Disease.

OBJECTIVE: To examine the relations of individual and cumulative social risk factors to hospitalization outcomes and adherence to outpatient cardiology appointments within the first 2 years of life for congenital heart disease survivors. STUDY DESIGN: Data were extracted for 219 patients who underwent infant cardiac surgery with cardiopulmonary bypass. Cumulative social risk was dichotomized into high social risk (≥2 risk factors; n = 103) versus low social risk (≤1 risk factor; n = 116). The risk of morbidity by procedure was assigned from 1 to 5 (Society of Thoracic Surgeons and European Association for Cardio-Thoracic Surgery Morbidity Scores and Categories). Two-way ANOVAs examined the effects of social risk and morbidity risk on length of first surgical hospitalization, number of readmissions and readmission days, subsequent cardiac surgical interventions, and adherence to outpatient cardiology appointments. RESULTS: An interaction between social risk and morbidity risk was identified for number of readmission days, F(4, 209) = 3.07, P = .02, η2 = .06. Pairwise comparisons demonstrated that, among those patients with the lowest risk of morbidity by procedure (morbidity scores of 1 and 2), patients at high social risk had more readmission days than patients at low social risk (morbidity score 1: 16.63 ± 34.41 days vs 3.02 ± 7.13 days; morbidity score 2: 27.68 ± 52.11 days vs 2.20 ± 4.43 days). High social risk also predicted significantly worse adherence to cardiology appointments. CONCLUSIONS: Cumulative social risk impacts readmission days for patients with congenital heart disease with a low risk of morbidity by procedure. Social risk assessment can identify families who may benefit from social/behavioral interventions to optimize discharge readiness, congenital heart disease home management, and long-term outcomes.

Mothers and Fathers Experience Stress of Congenital Heart Disease Differently: Recommendations for Pediatric Critical Care.

OBJECTIVE: To inform pediatric critical care practice by examining how mothers and fathers experience the stress of caring for a young child with congenital heart disease and use hospital and community supports. DESIGN: Qualitative study of mothers and fathers of young children with congenital heart disease. SETTING: Tertiary care pediatric hospital in the Mid-Atlantic region of the United States. SUBJECTS: Thirty-four parents (20 mothers, 14 fathers) from diverse backgrounds whose child previously underwent cardiac surgery during infancy. INTERVENTIONS: Subjects participated in semi-structured, individual interviews about their experiences and psychosocial needs at the time of congenital heart disease diagnosis, surgical admission, and discharge to home after surgery. Qualitative interview data were coded, and consistent themes related to emotional states, stressors, and supports were identified. MEASUREMENTS AND MAIN RESULTS: Fathers experience and respond to the stressors and demands of congenital heart disease in unique ways. Fathers often described stress from not being able to protect their child from congenital heart disease and the associated surgeries/pain and from difficulties balancing employment with support for their partner and care of their congenital heart disease child in the hospital. Fathers were more likely than mothers to discuss support from the work environment (coworkers/managers, flexible scheduling, helpful distraction) and were less likely to describe the use of hospital-based resources or congenital heart disease peer-to-peer supports. CONCLUSIONS: This study highlights the importance of understanding the paternal experience and tailoring interventions to the unique needs of both mothers and fathers. Opportunities for critical care practice change to promote the mental health of mothers and fathers following a diagnosis of congenital heart disease are discussed.

Psychometric evaluation and revision of Carver and White's BIS/BAS scales in a diverse sample of young adults.

The psychometric properties of the Behavioral Inhibition System and Behavioral Activation System (BIS/BAS) scales (Carver & White, 1994) were evaluated in a large, racially diverse sample of undergraduate students. Findings from this study indicate that the BIS/BAS scales work differently (i.e., are multidimensional and lack configural invariance) when assessing BIS and BAS in a diverse sample. Numerous model modifications were needed to obtain adequate fitting models for the total sample and individual racial groups. The findings suggest that this is due to items that assess multiple constructs differently across self-reported race categories. As part of this research, a revised version of the BIS/BAS scales was constructed that appears to be invariant across self-reported race category and simultaneously addresses the other psychometric concerns associated with the original scale. Caution should be used when applying the BIS/BAS scales as originally specified to assess behavioral inhibition and activation in a racially diverse sample. Researchers might want to use this revised version of the scale as an alternative.