Supporting parenting during infant hospitalization for congenital heart disease

Abstract

Objective

To characterize the parenting priorities of mothers and fathers of infants hospitalized with congenital heart disease and generate recommendations to support parenting during infant hospitalization.

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 congenital heart disease responded to questions about parenting during hospitalization via private social networking site. Responses were analyzed 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 hospitalization.

Conclusions

Care teams can support parenting during infant hospitalization by promoting parents’ roles as primary caretakers and decision-makers and attending to the emotional impact of infant hospitalization on the family.

Introduction

Congenital heart disease (CHD) is among the most common causes of intensive care unit (ICU) admission for infants.¹ Infants with CHD who require cardiac surgery spend weeks or even months in the hospital exposed to invasive tubes and lines, mechanical ventilation, and at times mechanical circulatory support, which restrict parents’ ability to independently engage in their infant’s care, including holding, comforting, and spending time alone with their infant.^2,3 In many cases, this period of critical illness and hospitalization occurs immediately or soon after birth, at a time when the parent-infant bond and, for first time parents, the parenting role are in the formative stages of development.⁴

Parents of hospitalized infants with CHD experience stress resulting from limited opportunities to participate in typical parenting tasks,^5,6 as well as difficulties bonding with their critically ill infant.⁷ Alterations to the expected parenting role and difficulties establishing the parent-infant bond can have long-term negative outcomes for the child, parent, and family.^8,9 Prior research indicates that alterations to the parenting role in the cardiac critical care setting is associated with anxiety symptoms in mothers,² and that parent mental health influences emotional, behavioral, and quality of life outcomes for children with CHD.^10–12 Parents who feel disempowered with regard to their parenting role may also be less likely to advocate for their infant’s needs within the hospital setting and following discharge.¹³ Research in other high-risk populations demonstrates a relationship between early parent-infant bonding and child neurodevelopmental and behavioral outcomes^14–17 and preliminary findings within the CHD literature have demonstrated an association between early bonding difficulties and later developmental delays.⁸ Early parenting behaviors and the developing parent-infant bond may be modifiable factors contributing to neurodevelopmental impairments common among children with CHD.¹⁸

Understanding the parenting actions and values that mothers and fathers prioritize within the context of pediatric critical illness allows providers to support parents in optimal medical decision making and reduce stress associated with alterations to the parenting role.¹⁹ For infants with CHD, who may be particularly susceptible to the deleterious effects of parental stress and disrupted bonding, understanding and supporting parenting priorities is likely important to promoting a trajectory of healthy neurodevelopmental outcomes. However, no studies to our knowledge have engaged parents in the process of identifying parenting priorities during infant hospitalization for CHD. Through innovative crowdsourcing methodology, this qualitative study aimed to characterize priorities for parenting an infant with CHD in the hospital and generate recommendations to support parenting practices during infant hospitalization to promote positive child, parent, and family outcomes.

Materials and Methods

Participants and Recruitment

The current study included 79 parents who provided responses regarding parenting an infant with CHD in the hospital as part of a larger qualitative study. Inclusion criteria for the larger study were having a child born with CHD one to seven years prior to study participation who underwent open-heart surgery in the first year of life, being able to read and write in English, and access to the internet on a computer, tablet, or mobile device. Bereaved parents were included. A study announcement containing the direct link to a brief online recruitment survey was posted to the social media pages of several CHD-specific patient and family advocacy organizations (e.g., Pediatric Congenital Heart Association, Mended Little Hearts), including one dedicated to families of children with single ventricle physiology (Sisters by Heart). The recruitment survey collected basic demographic (e.g., race, ethnicity, education level) and child clinical (e.g., single ventricle versus two ventricle physiology) information from parents potentially interested in study participation and was completed by 249 parents over a one-week period. By applying an algorithm that considered the frequencies of each demographic and clinical characteristic among those who completed the recruitment survey, a subset of parents (N = 179) representing diversity in backgrounds and experiences were invited to participate in the larger study. Of these, Of the invited parents, 108 participated in the larger qualitative study and 79 contributed responses related to parenting during hospitalization. This study was approved by the Nemours Institutional Review Board and informed consent was obtained electronically prior to study procedures.

Procedures and Measures

A stakeholder advisory council consisting of four parents of children with CHD who underwent cardiac surgery during infancy and six multidisciplinary care providers from four pediatric hospitals convened regularly throughout the study to provide guidance on study methodology and interpretation of results. Qualitative data were collected through online crowdsourcing methodology. Crowdsourcing is an internet-based activity that allows large groups to collaboratively identify problems and propose solutions to the mutual benefit of the organization generating the task and the community generating results.²⁰ Crowdsourcing has been used to efficiently engage community stakeholders in the process of identifying the needs and lived experiences of patients and their families.^21–23

Participants created deidentified accounts on Yammer, a private online social networking site. Over a six-month period, a total of 37 open-ended study questions were posted to the online group. Questions were generated by the study team and refined by the stakeholder advisory council. Three questions were specifically aimed at capturing experiences of parenting an infant with CHD in the hospital and recommendations to support parenting (e.g., “How did your baby’s care team support your participation and involvement with your baby’s care in the ICU/hospital?” “How do you wish that your baby’s care team had supported your participation and involvement with your baby’s care in the ICU/hospital?”), while the remaining 34 questions captured other relevant psychosocial domains. Parents responded to study questions through the Yammer app on their tablet or mobile device or by email. To facilitate collaborative efforts at problem solving among participants, parents could view each other’s responses and “like” or comment on these responses. All dialogue was included as qualitative data.

Data Analysis

Qualitative data were analyzed using an inductive thematic approach, focused on subjective perceptions, feelings, and experiences.²⁴ Parent responses to open-ended questions and dialogue between participants were extracted from Yammer and uploaded into Dedoose Version 8 (SocioCultural Research Consultants, LLC, Los Angeles, CA). The qualitative codebook was developed through an iterative process with input from the stakeholder advisory council. After finalizing the codebook, four participants’ complete responses were independently coded by four raters to establish inter-rater reliability (0.81–0.90 pooled Cohen’s kappa coefficient) and disagreements were resolved through reflection and discussion. The remaining participants’ responses were divided among the four raters. Responses double-coded with “hospitalizations/surgeries” (indicating that the response described an experience during hospitalization) and either “parenting” or “education/preparation/knowledge” (to capture responses related to decision-making) were reviewed. Broad themes regarding experiences of parenting an infant with CHD in the hospital and recommendations to support parenting were identified. Then, participant responses were organized by theme and examined to identify distinct subthemes supporting each theme. To identify general trends in the qualitative data, frequencies and cross tabulations were generated. Each participant response was assigned a number corresponding to a theme and coded by the select demographic variables for which there were sufficient sample diversity (i.e., education level, household income). Themes are described in terms of relative distribution.

Results

Participants were 79 parents (60 mothers, 19 fathers) whose child underwent one or more open-heart surgeries in the first year of life (72.2% in the first month; Table 1). Two-thirds (67.1%) of children of study participants were hospitalized for over a month across the first year of life and nearly half were discharged with a feeding tube (49.4%). Participants were diverse with regard to education level, household income, and urban-rural classification, although the majority identified as Non-Hispanic White (89.9%). Participants did not differ significantly from the groups of parents who were invited to participate (N = 179) or did participate (N = 108) in the larger study with regard to sociodemographic characteristics (gender, race/ethnicity, education level, urban-rural classification). Participants’ children received care across 41 US pediatric hospitals.

Table 1.

Sociodemographic and Clinical Characteristics (N = 79)

	Frequency (%)
Parent Characteristics
Race/Ethnicity
Non-Hispanic White	73 (92.4)
Black or African-American	2 (2.5)
Hispanic/Latino	5 (6.3)
Asian	3 (3.8)
Education Level
High School/GED	25 (31.6)
Associates Degree	11 (13.9)
Bachelor’s Degree	19 (24.1)
Graduate Degree	24 (30.4)
Annual Household Income
<$50,000	25 (31.6)
$50,000 – $99.999	25 (31.6)
$100,000 or more	28 (35.4)
Married/Partnered	75 (94.9)
Geographic Classification
Rural	21 (26.6)
Suburban	43 (54.4)
Urban	15 (19.0)
Child Characteristics
Prenatal Cardiac Diagnosis	51 (64.6)
Single Ventricle Cardiac Physiology	38 (48.1)
Premature Birth	18 (22.8)
Suspected/Confirmed Genetic Syndrome	15 (19.0)
Age at First Surgery
Less than 1 month	57 (72.2)
1–3 months	10 (12.7)
4–9 months	11 (13.9)
>1 Open Heart Surgery	57 (72.2)
Days in Hospital During Infancy (<12 months)
<30 days	21 (26.6)
30–59 days	21 (26.6)
60–90 days	16 (20.2)
>90 days	20 (25.3)
Discharged with Feeding Tube	39 (49.4)

Note. Some participants endorsed more than one race/ethnicity.

Qualitative Themes

Three broad themes regarding parenting priorities emerged from the qualitative data, with several subthemes supporting each broad theme (Table 2). The relative distribution of themes were similar across parents with varying levels of education and household income. Specific recommendations and actions to support parenting priorities during infant hospitalization were also identified from parent responses and are summarized in Table 3.

Table 2.

Themes and Representative Quotes

Theme	Sub-theme	Representative quotes
Establishing a bond with my baby	Becoming my baby’s primary caregiver	I wish they had considered how involved we wanted to be, especially in the ICU. We really wanted to have a “normal” newborn experience, and it would have been great if they had recognized it and helped us try to be as normal as possible. They could have asked us what we wanted to do or if there was anything we weren’t comfortable doing.
	Learning how to provide care in the hospital	Teaching us how to do things from the beginning…We would’ve felt more empowered if we could have known things from the beginning and been physically caring for her more. You feel so helpless already with CHD, but not being able to feed your baby or change their diaper just makes you feel useless entirely.
	Feeling confident when providing care	When we moved from CVICU to the step-down unit, we were unprepared for the change in level of care…we were now more responsible for the care of his needs but the medical care still scared me and there wasn’t the same 1-on-1 to ask questions, walk us through it. We just had to figure it out for ourselves.
	Making the hospital feel like home	I was able to learn a lot and was encouraged to care for my baby the way I felt was beneficial. It was nice to have their guidance but not be forced to do things their way so I could learn to parent and bond with my baby in an almost normal way, despite being inpatient.
Asserting my role as a parent	Becoming my baby’s primary decision-maker	One doctor would always ask our permission to listen to our son with a stethoscope. After a few months I asked him why he asked our permission. He told me that when a baby is critically ill, that sometimes the only decision that a mom gets to make regarding care is allowing him to listen to their baby.
	Learning about my baby’s medical condition	I felt powerless to help. I couldn’t feed him, hold him and could barely touch him…I tried to cope by learning everything I could about his diagnosis. I asked endless questions, I read journal articles, I memorized what drugs he was on and what they all did. This helped to at least make me feel like I was a small part of the team keeping this sweet baby alive.
	Advocating for my baby’s needs	[During] previous hospital stays I [felt] like I was on a different side than the team…they had their side and parents had their side. That made it so I wasn’t able to open up to them or advocate the best I knew how for [my baby]. I have learned over time that we are on the same team…I have been more able to express myself
	Acting according to our family’s values and preferences	There was a lactation specialist who was…insisting that I get back to breastfeeding and ignoring my stress over potentially hurting my baby…She was a knowledgeable professional but she wasn’t very supportive…to a mom who just went through something traumatic…Pumping was what worked for us and she could have been more respectful and encouraging of our choice.
Coping with fear and uncertainty	Sharing my experiences without fear of judgement	There were some nurses…we were comfortable sharing our frustrations and stresses with…Those who would hear us out and address our concerns in rounds. They understood hospital related stresses better than most. There were others we didn’t trust or didn’t agree with…they added to the stresses we were already experiencing.
	Receiving support to care for myself	I also wish someone would have told me that anxiety and PTSD are common for heart parents and that it is completely normal to feel overwhelmed, worried, scared, helpless and isolated. I don’t think I was prepared for all of those feelings and I certainly didn’t know what to do with them when I was so focused on trying to help my baby.

Table 3.

Recommendations to Support Parenting during Infant Hospitalization

Theme	Recommendations	Actions
Establishing a bond with my baby	Prioritize parent involvement in care	Invite parents to participate in the daily care routine Encourage parents to comfort and interact with their infant Ensure parents have the opportunity to support infant milestones
	Educate parents on how to adapt typical infant care tasks in the hospital setting	Explicitly instruct parents on which aspects of care they can provide Provide lactation support and prioritize parent holding and breastfeeding even when logistically challenging
	Gradually increase parent involvement in care	Increase nursing support around transitions and when new care tasks are introduced Ensure expectations for parent involvement are consistent across staff
	Help the hospital feel like home	Ensure that parents have quiet time alone with their infant and infant’s siblings Support parents in establishing care routines
Asserting my role as a parent	Support parents in becoming primary decision-makers	Provide parents with enough information about their infant’s condition (even when information is potentially upsetting) to make informed medical decisions When parents are present, ask permission before providing non-emergent care
	Openly share information with parents	Elicit parent preferences for receiving information about their infant’s condition and prognosis and share information according to these preferences
	Treat parents as trusted and valued care team members	Listen to parent concerns and encourage shared decision making during bedside rounds
	Show acceptance of parenting values	Withhold judgement for parenting practices Recognize when hospital protocols conflict with parenting values and demonstrate flexibility when possible
Coping with fear and uncertainty	Attend to parent emotional experiences	Invite parents to share their experiences with medical providers Recognize when parent disengagement in care may be due to anxiety rather than disinterest
	Encourage self-care	Alter hospital protocols that require parents to be present at the infant’s bedside at all times Normalize experiences of stress and anxiety during hospitalization Provide psychosocial supports in the hospital for parents

Establishing a bond with my baby.

Fostering a strong bond with their infant was described by almost all parents as an important aspect of parenting in the hospital. This theme was supported by four subthemes: becoming my baby’s primary caregiver, learning how to provide care in the hospital, feeling confident when providing care, and making the hospital feel like home. Parents reported the need for a “normal” newborn experience, which was easily disrupted by restrictions on physical contact with their infant, limited opportunities to soothe or feed their infant, and their infant’s nurse frequently assuming a primary caretaker role during the initial days of hospital admission. Many parents described feeling distressed about how the disruption in bonding would affect their long-term relationship with their infant and expressed gratitude for medical teams who prioritized parent involvement in care. Parents described that involvement in care fostered a sense of control when they would otherwise feel helpless to impact their infant’s medical progress. Some parents described feeling that medical staff prioritized convenience over infant developmental needs by delaying parent involvement or discouraging parent participation in care. Prioritizing parent involvement was particularly salient for bereaved parents, who described that they were often told by medical staff to wait for “firsts” (e.g., feeding or bathing their infant for the first time), which were never realized.

Support for breastfeeding was an especially relevant aspect of bonding for many parents. Parents acknowledged that accommodating breastfeeding, particularly in the cardiac intensive care unit, could be cumbersome for nurses, but indicated that feeding their infant was an important aspect of bonding during hospitalization. Parents recommended that medical staff provide lactation support to parents and understand the importance of breastfeeding for many mothers. Parents described that when holding or feeding was not indicated due to their infant’s medical status, they appreciated being encouraged by medical staff to read to, talk to, or spend time near their infant.

Parents urged that medical teams should understand and acknowledge that parents may be less likely to engage in the infant’s care due to uncertainty, rather than disinterest. They described feeling fearful that they may accidentally hurt their infant while trying to provide care, and feeling helpless to protect their infant from discomfort. Many parents described feeling that they had been “thrown into the deep end” without sufficient supports, which contributed to increased anxiety around, and avoidance of, participation in care. Parents relied on bedside nurses to provide hands-on teaching around medical care (e.g., dressing changes, nasogastric tube care, etc.) and accommodations for typical infant care (e.g., diaper changes, bathing, etc.). Practical education, including explicit instructions about what aspects of care parents could or could not provide, and encouragement from nursing staff helped parents to build their confidence in their infant’s care and further restored normalcy to the experience of bonding with their infant during hospitalization. Similarly, parent participation in speech, occupational, and physical therapies provided parents with knowledge of their infant’s developmental needs and allowed parents to feel confident in supporting developmental progress in the hospital.

Parents also appreciated support from staff to help the hospital feel like home. Parents described that parenting their infant involved being able to create care routines and provide care independently of medical staff. Many parents described the difficulty of feeling that they had to “ask permission” to engage with their infant. Making decisions about when and how to provide care helped to empower parents, build parenting efficacy, and reestablish parents as primary caregivers in the hospital. Parents reported that opportunities to allow siblings to visit their infant were important parenting experiences. They indicated that spending time alone with their infant and other siblings supported bonding as a family during hospital admissions and facilitated sibling adjustment.

Asserting my role as a parent.

Mothers and fathers both reported that asserting their parenting role was key to parenting their infant during hospitalization. This theme was supported by four subthemes: becoming my baby’s primary decision-maker, learning about my baby’s medical condition, advocating for my baby’s needs, and acting according to our family’s values and preferences. When medical providers listened to parent concerns and acknowledged parents as the experts in their infant’s unique care needs parents felt they were able to effectively advocate for their infant, act as their infant’s primary decision-maker, and ensure their infant received the highest quality of care. Parents commonly reported that it was helpful when medical providers cultivated an environment where parents were viewed as trusted and valued members of the care team. This was supported by a family centered approach to bedside rounds and regular care team meetings held away from the bedside to discuss progress, plans, and parent concerns. Several fathers described feeling that they were treated as less important than mothers by medical teams, and that providers often talked and listened more to mothers than fathers. They recommended that medical teams treat fathers as equivalently engaged caregivers to support fathers’ ability to parent during hospitalization.

Parents reported that frequent, open sharing of information about their infant’s diagnosis and treatment supported their parenting need to participate in decision-making about their infant’s care. Receiving education about medications, surgeries, and procedures, and being oriented to the monitors, lines, and tubes involved in their infant’s care were particularly helpful for parents. Parents described that they preferred to know as much information as possible, even when that information was potentially scary or upsetting, so they had a complete understanding before making medical decisions.

Many parents reported experiencing judgement from care team members at various times during hospitalization, such as when spending time away from the bedside to engage in self-care or care for their other children. These parents described that it was helpful when medical providers respected their values and preferences and that negative comments about parenting choices often led to ruptures in trust between parents and providers. While parents understood the need for specific hospital protocols, they emphasized that some flexibility was necessary to accommodate each family’s unique circumstances.

Coping with fear and uncertainty.

Many parents reported that a major barrier to parenting in the hospital was the fear and uncertainty of caring for a medically unstable infant in an unfamiliar environment. This theme was supported by two subthemes: sharing my experiences without fear of judgement and receiving support to care for myself. Being emotionally available to their infant was described as a key parenting role, which was well supported by care teams who fostered open communication about emotional experiences and encouraged parental self-care. Parents who had regular opportunities to discuss their emotional health with a psychosocial provider noted that this was important for normalizing their emotional experiences. Several parents described worrying that the medical team would not allow them to participate in their infant’s care if they expressed emotional distress. Parents also reported feeling that their infant’s medical team held expectations for parent involvement in care that did not allow for self-care (e.g., being present at the baby’s bedside at all times). When care teams did not normalize parental emotional experiences during hospitalization, parents reported that they often delayed seeking treatment for symptoms of anxiety, depression, and post-traumatic stress.

Discussion

The current study used innovative crowdsourcing methodology to engage parent stakeholders in the process of identifying priorities for parenting an infant with CHD in the hospital and generating recommendations to support parenting priorities during hospitalization. Parents in this study voiced the need for medical teams to support their role as primary caretaker and decision-maker, and for teams to acknowledge and support the emotional impact of parenting a critically ill infant. Support for these parenting priorities may reduce stress associated with alterations to the expected parenting role during hospitalization and ultimately promote healthy family functioning and positive neurodevelopmental and behavioral outcomes for infants with CHD.

Past studies of parenting priorities during hospitalization have identified that parents seek to act as the person who knows their child best by meeting their child’s needs and making decisions in their child’s best interest.²⁵ In the current study, parents described the need for support around becoming the person who knows their infant best. Parents face many barriers in bonding with their infant in the cardiac critical care setting. Providers can encourage this essential experience by providing education on infant care and medical needs, and by inviting and supporting parent partnership in care.²⁶ Models of care, such as Individualized Family-centered Developmental Care, may meet this parenting need by engaging parents in the process of learning to read and respond to their infant’s unique behavioral cues.³

Parents in this study also reported the need for support around becoming their infant’s primary decision-maker. Palliative care research indicates that parents of older children view communication with their child’s medical provider as vital during critical illness.²⁷ Recognizing parents as key collaborators in treatment planning also helps to empower parents in critical care settings.^28,29 Provider support for parenting values and decision-making preferences may strengthen the relationship between medical teams and families so that provider and parent goals are aligned, while also promoting parenting role attainment. Empowered parents may also more effectively advocate for their infant’s health needs after discharge,¹³ including detecting problems early and alerting medical professionals to the need for anticipatory care.³⁰

Parents’ emotional experiences and mental health must be addressed to support both parent-infant bonding and parental decision-making. Parents of critically ill infants who experience anxiety, depression, or post-traumatic stress symptoms may be less engaged in their baby’s care^31,32 and be more passive in their decision-making style.³³ Parents in the current study expressed the need for their infant’s providers to normalize the emotional distress related to infant critical illness and encourage self-care to support mental health.

Both mothers and fathers identified psychosocial support as a critical facilitator of engaged parenting.

Parenting needs were similar across parents with varying levels of education and household income.. Future research should examine how parenting needs during infant hospitalization may differ by other parent or family characteristics not explored in this study due to limited sample diversity (e.g., race/ethnicity, primary language). Survey tools exist to identify parenting values and clarify parent preferences during end-of-life decision-making in the pediatric intensive care unit.³⁴ Creation of a tool to identify parenting priorities and preferences for infants hospitalized with CHD could further aid cardiac critical care teams in initiating individualized parenting supports during hospital admissions.

Several limitations should be noted. While study participants were diverse with regard to education level, household income, and urban-rural classification, this sample was not ethnically or linguistically diverse. Racial/ethnic and cultural differences are known to impact parents’ preferences for communication in the pediatric critical care setting³⁵ and likely also impact parenting priorities, but such differences could not be examined in this study. Further, fathers comprised only 24% of the sample, and themes described in this study may not fully capture fathers’ parenting priorities. Future research is needed to understand how fathers’ parenting can best be supported during infant hospitalization. Nearly half of participants had a child with single ventricle physiology, possibly limiting the generalizability of study findings to families of infants with more complex forms of CHD and longer hospital stays. Additionally, participants’ children were born between one and seven years ago, and it is possible that time since infant hospitalization may have influenced responses or that some responses may reflect needs that have been addressed by recent hospital policy changes. Finally, the collaborative nature of crowdsourcing methodology and in particular, parents’ ability to view comments from other participants prior to submitting their own responses, could have influenced some responses. Unlike in-person data collection (e.g., focus groups), however, participants were de-identified and had time and space to voice their opinions in writing rather than succumbing to a dominant group member.

Conclusions

The hospital setting encompasses modifiable factors that can be altered to potentially reduce parental distress and promote positive developmental outcomes for infants with CHD. By supporting the parenting needs outlined in this study (i.e., promoting parents’ roles as primary caretakers and decision-makers and attending to the emotional impact of infant hospitalization on the family) providers may facilitate a positive trajectory of responsive parenting practices during a critical period, while also fulfilling the ethical imperative to act in the best interest of their patient through shared decision-making and family centered care.