Siblings of Young Children with Congenital Heart Disease: Parent Perspectives from a Crowdsourcing Study

Abstract

Objective:

To gather parents’ perspectives of the experiences of siblings of young children with congenital heart disease (CHD), the impact of CHD on siblings, and the types of resources and supports they need to adjust to CHD within their family.

Methods:

A community advisory council guided the study. Parents of children with CHD, currently 1–7 years old, who had surgery in their first year of life were eligible for participation if they were fluent in written English and had internet access. Recruitment through several CHD-specific nonprofit organizations produced a national sample of parents (N=108). Of the 73 who had non-bereaved heart-healthy children, 59 (81%) provided sibling-relevant data for this study. Most parents were non-Hispanic White (n=54; 91.5%) mothers (n=41; 69.5%; Mage=36.10; SDage=5.0) reporting on siblings older than the child with CHD (n=44; 74.6%). Data were qualitative, collected through crowdsourcing, and coded to distill themes.

Results:

Three themes emerged: (1) CHD directly affects siblings’ psychosocial functioning and daily activities, (2) CHD alters roles and relationships within the family, with impacts to siblings, and (3) families seek and appreciate support for heart-healthy siblings from extended family and friends, the healthcare team, and the community but resources are variable.

Conclusion:

Parents described specific ways that CHD impacts their heart-healthy children, including their psychosocial functioning, role in the family, and support from the community. Findings highlight the need for family-centered care in CHD, including screening to identify siblings at-risk for psychosocial difficulties and provision of appropriate supports to meet sibling and family needs.

Congenital heart disease (CHD) is the most common birth defect in the United States (U.S.), occurring in approximately 40,000 infants annually (Centers for Disease Control and Prevention, 2024). While treatment of CHD varies widely based on the specific defect, the stress and resource burdens placed on families associated with follow-up care, monitoring, and hospitalization can be significant (Connor et al., 2010; Ernst et al., 2018; Sood, Lisanti et al., 2021). Approximately 25% of children with CHD require surgery within the first year of life (Centers for Disease Control and Prevention, 2024) and may be hospitalized in a cardiac intensive care unit for weeks or months afterward (Lisanti et al., 2019). These children need complex care over their lifespan to address acute changes in their health status, monitor their cardiac function, and support their neurodevelopmental needs (Lantin-Hermoso et al., 2017; Roberts et al., 2021). Many of these children require special education services and close to 60% have health care needs beyond cardiac care (Centers for Disease Control and Prevention, 2024). These ongoing care needs can cause distress and disruptions within families (Denniss et al., 2019) that can alter psychosocial health for all members of the family (Kolaitis et al., 2017; Parker et al., 2020; Sood, Lisanti et al., 2021).

Research regarding families of children with CHD has identified challenges similar to those for other pediatric diseases. Parents have been found to engage in more permissive parenting and overprotectiveness of their child with heart disease (Brosig et al., 2007; McWhorter et al., 2021; Tesson et al., 2019). Additionally, parents of children with CHD endorse high rates of stress, depression, anxiety, and poor physical health (Brosig et al., 2007; Sood, Lisanti et al., 2021; Tesson et al., 2019), with up to 80% reporting clinically significant traumatic stress and other psychosocial distress symptoms (Biber et al., 2019; McWhorter et al., 2021; Woolf-King et al., 2017; Wray et al., 2018). Further, CHD-related traumatic stress symptoms and caregiver burden have been found to strain parental mental health, alter family functioning and relationships, and impact the adjustment of all children in the family (Brosig et al., 2007; Roberts et al., 2021; Sood, Lisanti et al., 2021; Woolf-King et al., 2017).

Research to date has focused primarily on the experiences and outcomes of children with CHD and their parents (Areias et al., 2013; Williams et al., 2019); data on heart-healthy siblings of children with CHD is more sparse. In a recent review (Parker et al., 2020), 11 studies examining siblings of children with CHD were identified and approximately half of those were published over 20 years ago. Results indicate that siblings of children with CHD may feel jealous, resentful, neglected and excluded, and experience diminished quality of life (e.g., Azhar et al., 2016; Wray & Maynard, 2005). Several studies found behavioral and emotional challenges in siblings, with one study demonstrating that siblings of children with CHD had significantly more internalizing and externalizing problems than siblings of children with other chronic illnesses that require daily life-long care such as diabetes and cystic fibrosis (Havermans et al., 2015). Changes in siblings’ everyday lives were noted as well, such as less time together as a family (Wray & Maynard, 2005), decreased opportunities for social activities, and increased responsibilities at home (Williams et al., 1993). More recently, positive impacts of CHD have also been noted such as strengthened family cohesion and increased sibling empathy (Bichard et al., 2022; Schamong et al., 2024). However, the limited attention given to experiences of heart-healthy siblings hinders efforts to promote their healthy adjustment, highlighting the need for more research to better understand their unique challenges and support their well-being.

This study adds to the current literature by focusing on parents’ perceptions of the experiences of siblings of young children with CHD, the impact of CHD on siblings, and the types of resources and supports siblings need to understand and adjust to CHD within their family. Data were collected as part of a larger qualitative online crowdsourcing project aimed at understanding families’ experiences caring for a young child with CHD and eliciting parents’ recommendations for family-based psychosocial care for CHD (Driscoll et al., 2023).

Methods

Community Advisory Council

A community advisory council (CAC) assisted in development and refinement of recruitment procedures, data collection questions, and interpretation and dissemination of findings. It included three mothers and one father who held leadership roles in local or national CHD community organizations and seven professionals from the following disciplines: pediatric psychology, social work, cardiology, cardiac nursing, and palliative care. CAC members received a stipend for their contributions and time dedicated to the study.

Participants and Recruitment

Parents were eligible to participate in the larger study if they met the following criteria: (1) had a child born with CHD one to seven years prior who underwent open-heart surgery during infancy; (2) age 18 or older; (3) able to read and write in English; and (4) had access to the internet on a computer, tablet, or mobile device. Parents were recruited from across the U.S. through electronic word-of-mouth and the social media pages of several CHD-specific nonprofit organizations (e.g., Mended Little Hearts, Sisters by Heart, Conquering CHD). Embedded in the social media advertisements were links to a brief, pre-enrollment survey that collected information about race, ethnicity, education, location, and the child’s age and basic clinical information. Fathers and individuals from racially/ethnically minoritized backgrounds were underrepresented in the initial wave of pre-enrollment survey responses, so recruitment efforts were expanded to include additional outreach via social media, emails encouraging parents who already completed pre-enrollment surveys to share the study with others, and networking within the CHD community. Pre-enrollment surveys were completed by 249 parents.

An algorithm was employed to achieve enrollment of a maximally diverse national sample that matched the demographics of parents of children with CHD in the U.S. Parents who endorsed any of the following characteristics on the pre-enrollment survey were invited to enroll: racial or ethnic minority, male gender, bereaved, education level lower than bachelor’s degree, urban community, West or Northwest region of the U.S., or child currently age six. Next, parents who endorsed both being from rural communities and whose child had two-ventricle cardiac physiology were invited given underrepresentation. Lastly, all parents with a terminal 4-year college degree whose child had a two-ventricle physiology were invited. A total of 179 parents were invited and 108 enrolled (60.3% response rate). This study was reviewed and approved by the Institutional Review Board at Nemours Children’s Hospital, Delaware (protocol #971204). All participants completed consent electronically as well as a more detailed demographic survey via REDCap (Harris et al., 2009).

From the larger study sample of 108 parents of children with CHD, 78 indicated that they had at least one heart-healthy child on the demographics survey and/or answered questions related to heart-healthy children. Five of these 78 were excluded related to bereavement due to the unique circumstances and increased needs of bereaved siblings identified among other populations (e.g., Long et al., 2018). Fourteen parents who indicated that they had at least one heart-healthy child on the demographic survey (19%) did not provide sibling-relevant data. A total of 59 parents (81% of eligible parents with at least one heart-healthy child) provided relevant data. Responders and non-responders did not significantly differ in regard to race, ethnicity, gender, or geographic area (all comparisons via chi-square test, ps>0.05).

Crowdsourcing and Data Collection

Crowdsourcing, an online method of collecting data from dispersed participants, was used to gather data (Sood, Wysocki et al., 2021). Yammer (Version 7.20, Microsoft Corporation, Redmond, WA) was chosen as the study platform because it allowed participants to join a closed group specific to the study and engage anonymously. New questions were posted to the study group every two weeks. Participants received an email or notification on their phone (if they chose to download the Yammer app) when new questions were posted and were encouraged to reply by posting a response to each question within one week. Over the six-month study period (June-November 2017), 37 questions covering different family psychosocial topics were posted (e.g., education and preparation, parental peer support, sibling support, grief and loss; Driscoll et al., 2023). Parents were allowed to interact with each other through likes and comments on others’ posts.

Study questions were developed through an iterative process based on emerging themes as data were collected and input from the CAC. Three study questions specifically pertained to parents’ perspectives of heart-healthy siblings’ experiences: (1) How do you think having a sibling with CHD has affected the other children in your family? Please consider both positive and negative ways. (2) What sorts of things (if any) have you done to help the other children in your family understand and adjust to having a sibling with CHD? (3) What sibling supports (if any) has your family received from your child’s care center? What additional sibling supports or resources do you think would be helpful? Responses to eleven additional questions had comments related to siblings which were also included in the analysis (Table 1). Participants received $3 for every question that they answered on a reloadable gift-card.

Table 1.

Relevant Study Questions for Parents

Sibling Specific Questions
Q25: How do you think having a sibling with CHD has affected the other children in your family? Please consider both positive and negative ways.
Q26: What sorts of things (if any) have you done to help the other children in your family understand and adjust to having a sibling with CHD?
Q27: What sibling supports or resources (if any) has your family received from your child’s care center? What additional sibling supports or resources do you think would be helpful?
Related Questions (Parents Provided a Sibling-Related Response)
Q1: What are some things you wish you had known early on about how the CHD diagnosis could impact you and your family?
Q10: When thinking about how you were first informed of your child’s CHD diagnosis, what aspects were NOT helpful? What would have been more helpful?
Q11: What do you wish your child’s care team had known about you and your family? What got in the way of them knowing this?
Q12: What could your child’s care team have done to better understand you and your family?
Q13: Thinking back to when your baby was first in the ICU/hospital, how was your role as a parent different from what you had expected or what you had experienced with your other children? What was most difficult about this?
Q14: How did your baby’s care team support your participation and involvement with your baby’s care in the ICU/hospital?
Q19: To what extent did anyone from your child’s care team assess your level of stress and coping? How, when, and with what frequency did this occur?
Q29: In what ways has your child’s care team acknowledged your feelings of grief/loss, provided support, and/or connected your family to community resources? What was helpful and not helpful?
Q31: How has CHD impacted your relationship with and the way you parent your child, if at all?
Q32: If you have more than one child, how has CHD resulted in differences in your relationships with your children and the ways you parent them, if at all?
Q35: In what ways is it rewarding to parent a child with CHD? Some parents report positive changes or personal growth related to their CHD experiences. What has been your experience?

Data Analysis

Demographic information was descriptively analyzed and summarized using IBM Statistical Package for the Social Sciences software (Version 27). Qualitative data were analyzed using an inductive thematic approach, which identified themes from the data by focusing on the subjective perceptions, feelings, and experiences described by participants (Braun & Clarke, 2006). Text responses to the study questions and any comments were exported from Yammer and imported into Dedoose (Version 8, SocioCultural Research Consultants, LLC, Los Angeles, CA). The research team developed an initial codebook through an iterative process based upon review of responses from six participants with diverse backgrounds and experiences and input from the CAC. Four coders (ES, JC, LGM, ACD) used the codebook to independently code full responses of three participants; discrepancies and novel issues were discussed after coding each set of responses and revisions were made to the codebook as needed. Once the codebook was finalized, the responses of four additional participants were coded independently by the four coders, with intercoder reliability exceeding a predefined target of 0.80 (0.81–0.90; pooled Cohen’s kappa coefficient). Because intercoder reliability was met, the remaining responses were then distributed among the four coders for independent coding. Qualitative data assigned the “Siblings” code were included in the current analyses, and themes regarding experiences of siblings of children with CHD were identified and summarized (CMA, MAA). All individuals involved in qualitative coding and analysis had relevant qualitative training. De-identified data are available upon reasonable request. The Standards for Reporting Qualitative Research were followed (O’Brien et al., 2014).

Positionality Statement

We include this positionality statement to transparently reflect on our personal backgrounds and lenses through which we conducted, analyzed, and interpreted this qualitative research. The authors represent individuals who identify as non-Hispanic White or biracial, cisgender female, of various sexual orientations. Professionally, we hold graduate degrees in Psychology and Nursing, and we use qualitative and quantitative methods in our scholarly work. Several authors have significant experience working clinically with families of children with CHD. None of the authors have been diagnosed with CHD, but two have personal experience though a family member’s diagnosis. Two authors are siblings of someone with a non-life-limiting chronic health condition.

Results

The majority of parents (M_age = 36.10; SD_age = 5.0) identified as non-Hispanic White (n=54; 91.5%) mothers (n=41; 69.5%) who were living with a spouse/partner (n=58; 98.3%) and 44.1% (n=26) reported a household income of $100,000 or more. Approximately half of participants lived in a suburban area (n=33; 55.9%) and were distributed across U.S. regions, including 24% (n=15) in the Midwest, 23.7% (n=14) in the Northeast/Mid-Atlantic, and 23.7% (n=14) in the West. Participants’ children with CHD received care across 35 hospitals in the U.S. Most siblings were older than the child with CHD (n=44; 74.6%). See Table 2 for demographic information.

Table 2.

Demographics

Characteristic	Frequency (%) (n=59)
Parent Characteristics
Relationship to children
Mother	41 (69.5)
Father	18 (30.5)
Race/Ethnicity (check all that apply)
White	54 (91.5)
Hispanic/Latino	3 (5.1)
Asian	3 (5.1)
Black/African-American	1 (1.7)
Native American	1 (1.7)
Highest Level of Education
High School/GED	16 (27.1)
Associate’s degree	6 (10.2)
Bachelor’s degree	20 (33.9)
Graduate degree	17 (28.8)
Annual Household Income
< $50,000	14 (23.8)
$50,000 to < $100,000	18 (30.5)
$100,000 or more	26 (44.1)
Currently employed	37 (62.7)
Lives with a spouse/partner	58 (98.3)
U.S. Region
Northeast/Mid-Atlantic	14 (23.7)
Midwest	15 (24.4)
Southeast	10 (17.0)
Southwest	6 (10.2)
West	14 (23.7)
Geographic classification
Urban	9 (15.3)
Suburban	33 (55.9)
Rural	17 (28.8)
Family Characteristics
Number of children younger than the child with CHD
None	38 (64.4)
One	16 (27.1)
Two	5 (8.5)
Number of children older than the child with CHD
None	15 (25.4)
One	24 (40.7)
Two	5 (8.5)
Three	10 (16.9)
Four or more	5 (8.5)
Child with CHD Characteristics
Current age, years
1–3	35 (59.3)
4–6	24 (40.7)
Gender
Male	43 (72.9)
Female	16 (27.1)
Prenatal cardiac diagnosis	36 (61.0)
Single-ventricle cardiac physiology	25 (42.4)
> 1 open-heart surgery	45 (76.3)

Three overarching themes were identified from the qualitative data: (1) CHD directly affects siblings’ psychosocial functioning and daily activities, (2) CHD alters roles and relationships within the family, with impacts to siblings, and (3) families seek and appreciate support for heart-healthy siblings from extended family and friends, the healthcare team, and the community, but resources are variable. Throughout the results section, qualifiers are provided to demonstrate the commonality of the experiences described (e.g., the majority of participants, some participants, a few participants).

Theme 1: CHD directly affects siblings’ psychosocial functioning and daily activities

1a. Siblings’ experience a range of emotions and behaviors related to CHD.

Parents described various emotional and behavioral responses displayed by heart-healthy siblings throughout the CHD journey. At the time of diagnosis, some siblings were confused and had difficulty understanding and/or accepting the CHD diagnosis. During hospitalizations, some siblings experienced an increase in behavioral problems, seemed stressed, felt scared, and worried about seeing their sibling with CHD post-surgery. One mother (#84) indicated, “It was very hard on him. We had such long days at the hospital, and he hated when he had to go with us…he would get sad and ask if his baby brother was going to die.” For some siblings, behavioral problems and worries persisted after hospitalization, with parents describing concerns about symptoms of medical traumatic stress and anxiety, including separation anxiety, in their heart-healthy children. According to parents, their heart-healthy children sometimes felt left out when they were not involved in all of the hospital visits and medical appointments and displayed resentment and jealousy toward their sibling with CHD. Siblings were described as “growing up faster” as well as becoming more independent and mature through their CHD experiences. Although many parents reported that siblings struggled in the beginning, most indicated that they appeared to adjust well over time. Heart-healthy children were described as being more compassionate, loving, kind, helpful, empathic, and accepting of others as a result of their experience having a sibling with CHD. Parents indicated that these siblings demonstrated strength, resiliency, and adaptability throughout the CHD journey.

“He is old enough (just turned six) to know that he was being shuffled off or not the primary child to have our attention during her surgery and during her long recovery period at home. He even felt like going to summer day camp was a punishment because he saw that his little sister was staying at home with mommy…It’s a hard thing to explain to others, the dynamic of having other healthy children who must bend their ways to fit to the health needs of their CHD sibling. Although, the best outcome is that I do feel that our son is highly compassionate and understands being careful around his sister. That’s a wonderful benefit.”

(Mother #51)

1b. CHD may cause disruptions to siblings’ activities.

Parents described how CHD treatment and management affected siblings’ activities, with some reporting challenges maintaining daily activities and others reporting no to minimal disruptions. Throughout the CHD journey, parents tried to maintain a sense of normalcy for their heart-healthy siblings and limit disruptions, ensuring they had time to engage in normative school and after-school activities as well as have “heart worry-free time” (Father #155). However, some parents described more significant disruptions in daily routines related to CHD treatment and management including emergency department visits, hospitalizations, and outpatient appointments. Siblings sometimes missed school to be at the hospital or to attend medical appointments. While most siblings temporarily stayed with extended family and close friends, a few parents noted that siblings moved with their family to be closer to the hospital or transferred colleges to be closer to home. As a result of concerns about contagion and keeping the child with CHD healthy, especially around the time of surgery, siblings’ activities were sometimes modified (e.g., restrictions on outdoor activities, reduction in the amount of activities) or paused (e.g., stopping extracurricular activities including sports, temporarily homeschooling). A few parents reported that siblings rarely commented on changes to their activities and routines, though they occasionally expressed disappointment about missing out on certain activities. Many parents observed that changes and disruptions reduced over time, especially the farther out they were from surgeries.

“For our older daughter, we did have to refrain from ‘normal life’ for the first three years. She did have to make sacrifices for hospital stays and outpatient care. We did minimize vacations, but besides that we made every attempt for her to experience life as a normal child would. We made efforts for her to participate in extracurricular activities, school, and social life. Since Fontan recovery we have made efforts to live beyond the diagnosis.”

(Father #71)

Theme 2: CHD alters roles and relationships within the family, with impacts to siblings

2a. CHD has an impact on sibling roles and responsibilities.

Parents described ways that siblings’ roles and responsibilities within the family changed because of treatment for CHD. Heart-healthy siblings often took on the role as “helper,” including attending medical appointments, meeting healthcare professionals and asking questions, and being involved with medical tasks at home (e.g., assisting with medications, gastrostomy tube feeds). The level of sibling involvement varied, ranging from active tasks like changing bandages to more passive roles, such as sitting in on medical appointments.

Heart-healthy siblings were also described as “advocates” and “protectors” of the child with CHD. Parents conveyed that heart-healthy siblings learned medical information related to CHD and their sibling’s specific health history so that they could relay relevant information to professionals at school or in case of emergency when caregivers were not present.

“From the very beginning, every car ride I explained to the big kid how important it is that he be able to answer questions if any adult needed to ask about his brother and mom/dad/grandparents were not around or not responsive. Every stop light he would be quizzed for answers like ‘My brother is a heart kid. He has no right ventricle. He is on aspirin and allergic to latex and penicillin. There is a tag with his emergency informa-tion. He has had open heart surgery. He needs more repairs to his heart.’”

(Mother #52)

2b. CHD may strengthen relationships between siblings.

Earlier born heart-healthy siblings were eager to meet and bond with their sibling with CHD soon after their birth. However, hospital restrictions sometimes hampered visitation. For instance, one family noted that due to RSV “season,” their heart-healthy child had to wait several weeks before having the opportunity to meet their new sibling with CHD for the first time. During prolonged hospitalizations of the child with CHD, relationships between heart-healthy siblings were strengthened, as they relied on one another for support. Parents also observed that their children developed close relationships over time. Heart-healthy siblings were described as loving, supporting, comforting, caring, and patient with the child with CHD. Some were described as protective, watching out for their sibling with CHD. Although some parents indicated that heart-healthy siblings were very gentle and careful with the child with CHD, others noted no differences related to CHD. For instance, one parent noted that, “Our older boys do not treat the younger one any differently, they jump on each other and wrestle” (Mother #67).

2c. CHD impacts parental roles, responsibilities, and relationships with their heart-healthy children.

Parents saw themselves as responsible for educating their heart-healthy children about CHD, and they described tailoring this information in developmentally appropriate ways and emphasizing open communication. Parents helped their heart-healthy children learn how to engage with their child with CHD, particularly in the hospital setting when medical equipment was attached, and about specific needs related to CHD. Conflicting obligations were challenging for parents to navigate, particularly during prolonged hospital stays when they were trying to meet the needs of their child with CHD in the hospital and their heart-healthy child(ren) at home, often far away from the hospital. For instance, one parent stated, “How taxing it is to try and divide your time between your new baby and your kids at home and never seeming to satisfy either responsibility” (Mother #74). Prolonged hospitalizations strained family systems, with most parents noting that they missed out on time with their heart-healthy children. A few parents described connecting with their heart-healthy children through video chat or attempting to have some one-on-one time while at the hospital. Others were able to prioritize one-on-one interactions when they were home from the hospital and did this with each child to strengthen their relationships with each one. Managing conflicting obligations was less prominent, but still present, once families were reunited after hospitalizations and surgeries.

Some parents aimed to maintain similar parenting practices across their children, while others had different expectations, sometimes being less lenient with negative behaviors displayed by their heart-healthy children. Although parents expressed a desire to treat their children similarly, this was not always practical, as their child with CHD required more attention due to their unique health needs, and some reported a different connection with their child with CHD. As one mother (#21) indicated, “my relationship with my health son is definitely different than with my heart hero, not worse but definitely different.” Overall, most parents discussed how their CHD experience brought their families closer and emphasized engaging in purposeful family time through meals and shared activities, particularly after experiencing time away from each other. Many parents also described the importance of family celebrations—from big milestones to the mundane moments as they did not want to take anything for granted—and cherishing their time together as a family.

“CHD has softened our approach and opened our eyes to embrace any time we have as a family. We make a conscience effort to have family meals, embrace the healthy times, celebrate milestones… I believe that it has made us closer as a family and now I try to spend more individual time with the other three kids as well. CHD and the unknown future definitely puts life into perspective.”

(Mother #19)

Theme 3: Families seek and appreciate support for heart-healthy siblings from extended family and friends, the healthcare team, and the community but resources are variable

3a. Siblings receive support from extended family and close family friends.

Many parents described a strong support system of extended family members and close friends who were able to help with their heart-healthy children as needed, especially during prolonged hospitalizations. Most often this support included siblings temporarily staying with their extended family, such as grandparents, aunts, or uncles, while their parents and the child with CHD remained in the hospital. Sometimes heart-healthy siblings would “shuffle” between extended family members. On a few occasions, this support involved a close friend staying at the family’s home or coming over during the day to care for the heart-healthy child until a parent returned in the evenings.

Overall, these temporary stays were an opportunity for heart-healthy siblings to bond with extended family members and close friends in a unique way. For instance, one parent described how their heart-healthy children enjoyed spending more time than usual with their cousins. Support from extended family and close friends was critical throughout the CHD journey especially at the beginning when it was challenging for parents to navigate their new, often conflicting, responsibilities. For example, one mother (#74) indicated, “In reality though our families and friends bore the brunt of the support responsibility. I wish that you knew how hard it is on not just you and your spouse, but your whole circle.”

3b. Sibling support from the CHD healthcare team is variable.

Siblings who received some supports in this setting interacted with various members of the healthcare team, including child life specialists, social workers, music and art therapists, and nurses; these teams provided developmentally tailored education, engaged in medical play, and answered siblings’ questions related to CHD and surgeries. Occasionally, siblings had access to a “sibling club” or space to play at the hospital and were provided with toys. Some families reported feeling well supported by their CHD healthcare team, highlighting that the team knew the names of all of their children, checked in about how family members were doing, asked if families needed any additional resources, provided connections to community resources as needed, and supported parent breaks from the hospital. One mother (#25) noted, “the staff reassured me that my son was in the best medical hands so to not feel guilty if I needed to leave or be with my other child.”

However, the majority of parents reported that siblings received no or limited sibling resources in the hospital setting. A few families reported that although there were sibling groups offered through the hospital, their heart-healthy siblings did not participate because the sibling was unable to or the family was unsure about the group’s usefulness. Further, some families described feeling unsupported by their healthcare team. According to them, the team did not understand their unique family situation, ask about all family members, or offer support for parents who needed to leave the hospital to care for other children.

“During the time our child was hospitalized for 3 months after birth, [the healthcare team] could have understood better that mom was having to handle things at the hospital alone most of the time because dad was on military orders in another state and was not allowed to leave much to be there with her. Also, they did not understand the stress it placed on mom that the 12-year-old sister was back home without mom able to be there for her. Mom was under tremendous stress because of this, and sometimes the consideration of this stress was not there. The team could be very demanding at times, wanting mom to take care of all kinds of things 24/7 with little relief.”

(Father #39)

3b. Sibling support can be sought through the community.

When sibling-related services were not available within the hospital setting, some parents sought out services in the community. Through nonprofit organizations like Mended Little Hearts, families participated in activities such as 5k walk/runs or dance marathons. Similarly, some siblings took part in events organized by Ronald McDonald House during hospitalizations. These activities provided heart-healthy children with opportunities to feel included and to connect with other siblings affected by chronic medical conditions such as CHD. Parents also sometimes engaged with schools, checking-in with teachers about how their heart-healthy children were coping at school and utilizing school counseling services as needed. When sibling-focused psychotherapy services were unavailable in the hospital setting, a few parents reported seeking therapists in the community but occasionally encountered challenges finding a therapist due to scheduling conflicts, especially around the time of cardiac surgeries.

Overall, many parents wished that there had been more supports available for their heart-healthy children, either in the hospital or community settings, noting that so much of the focus was often on the child with CHD. Parents provided several broad suggestions, including organizations that have sibling-focused activities, opportunities for siblings to meet other siblings, books for siblings, and psychosocial provider involvement with siblings.

“I think centers need to make sure they are including siblings in any initiatives to provide mental health support. Siblings are impacted in so many ways and we need to ensure they get the help they need early on. I was concerned about these things since day one and wish I could have had more resources to support us on diagnosing and treating mental health concerns for siblings.”

(Mother #92)

Discussion

This qualitative study used a crowdsourcing approach to explore parents’ perspectives of the impact of CHD on their heart-healthy children as well as the types of resources received and needed for their heart-healthy children. Results suggest that CHD directly affects siblings’ psychosocial functioning and daily activities. CHD alters the roles and relationships within the immediate family, which for parents includes providing CHD education and guidance for their heart-healthy children. Similarly, siblings’ roles change, such that they may serve as helpers, advocates, and protectors of their sibling with CHD. Further, families seek and often receive support for their heart-healthy children from extended family, and at times, from their healthcare team and in community settings.

Findings from this study bolster and extend the limited literature on siblings of youth with CHD by examining siblings’ experiences across contexts, both within and beyond the immediate family. Parents described a range of negative emotions in siblings including jealousy, sadness, and exclusion, which is consistent with previous studies (Schamong et al., 2024; Wray & Maynard, 2005). Although siblings worry about the health of their sibling with CHD (Bichard et al., 2022; Wray & Maynard, 2005), parents in the current study also reported concerns about symptoms of medical traumatic stress and anxiety in their heart-healthy children, echoing findings from other chronic illness contexts (e.g., Long et al., 2018; Martinez et al., 2018). Siblings of youth with CHD experience disruptions to their daily activities, diminished parental attention, and changes to their quality of life. Many siblings may temporarily live with extended family and close family friends during hospitalizations. In a small qualitative study, six adolescent siblings reflected on their earlier CHD experiences, including disruptions to daily life, variable CHD knowledge, and changes to their sibling relationships (e.g., jealousy, protectiveness; Bernardino et al., 2024). However, consistent with the extant literature (e.g., Parker et al., 2020; Schamong et al., 2024), parents in this study also reported several positive sibling outcomes, such as increased maturity, empathy, autonomy, and strengthened family functioning, communication, and cohesion. These outcomes highlight the potential for positive adjustment and underscore the need for further research on resilience and posttraumatic growth among siblings of youth with CHD. Overall, these findings align with the broader literature on sibling adjustment, which points to a mix of both positive and negative experiences in the context of chronic health conditions (e.g., Long et al., 2018; Martinez et al., 2022; Pinquart, 2023).

Given that CHD affects heart-healthy siblings in a variety of ways, parents in the current study also described the need for resources and support for their heart-healthy children, which reinforces extant literature describing the need for psychosocial services for siblings (e.g., Bernardino et al., 2024; Schamong et al., 2024). Parents noted being primarily responsible for educating their heart-healthy children about CHD, including preparing them for the hospital setting, sharing information about their child’s unique needs related to CHD, and coaching them on ways to interact with their child with CHD. Although some parents referenced CHD-related resources to help facilitate these conversations, such as books, that they found helpful, these resources were not universally accessed, and families may also not know about or access existing resources that are available. Further, parents may also need support on ways to connect with their heart-healthy children during extended hospitalizations, as many noted this as a challenge. There are opportunities for healthcare teams and the community to support parents in these areas, as well as extended family members and close friends who may be providing care to heart-healthy siblings. For instance, psychosocial teams can serve a crucial role in sibling services, including assessing siblings’ psychosocial needs, teaching coping skills, providing medical education, preparing siblings for hospital visits, and educating parents on supporting siblings (e.g., Keller et al., 2024). Given the limited availability of psychosocial providers (Brosnan et al., 2022), pediatric psychologists may need to navigate ethical concerns when treating multiple family members, including siblings. A decision-making framework to evaluate risks and benefits in such cases is outlined by Forcino and colleagues (2024). Siblings of children with CHD may also benefit from community resources targeting siblings of youth with chronic conditions more broadly. For example, a systematic review has demonstrated the positive effects of recreational camps for siblings of children with chronic conditions (Rea et al., 2019). Future research would benefit from collaborative partnerships across contexts to build, refine, and disseminate evidence-based resources to meet the needs of families (e.g., Oberoi et al., 2019).

While family-centered psychosocial care within CHD has been previously recommended (Driscoll et al., 2023; Lisanti et al., 2019; Utens et al., 2018), findings from the current study further support the need for a family-centered care model that incorporates siblings (Long & Alderfer, 2020), as CHD affects the entire family. Presently, empirically supported psychosocial interventions tailored to the unique experiences and needs of siblings of youth with CHD are also scarce and currently only embedded in family-based supports, rather than sibling-specific interventions (Besier et al., 2010; Van der Mheen et al., 2019). In one qualitative study, adolescent and young adult siblings of individuals with CHD reported interest in an intervention that enables them to connect with siblings with shared experiences, gain a more in depth understanding of CHD, and build skills to advocate for their needs (Schamong et al., 2024). This type of participatory research is crucial for understanding heart-healthy siblings’ needs and goals which can set the stage for co-designing interventions. Co-creation with rather than for the community and amplifying individuals’ voices from marginalized backgrounds can ultimately increase acceptability, feasibility, and health equity (e.g., Stiles-Shields et al., 2022).

Future studies to develop and evaluate psychosocial services for siblings of youth with CHD are warranted, including systematic psychosocial screening to identity those at-risk and provision of appropriate levels of psychosocial care (i.e., universal, targeted, clinical) consistent with the Pediatric Psychosocial Preventative Health Model (Kazak, 2006; Long et al., 2021). Studies identifying and finding ways to surmount barriers to sibling care in the context of CHD are also needed. In childhood cancer, barriers to sibling care include limited funding, low parental awareness, health system issues (e.g., charting, billing), and a shortage of community providers with appropriate experience (Brosnan et al., 2022). While some barriers may overlap, exploring challenges specific to sibling services in the context of CHD could be valuable. Given the pervasive challenges to supporting siblings of children with chronic medical conditions, establishing community-academic partnerships (Amaro et al., 2023; Long et al., 2015) and implementing user-centered approaches are critical for the co-production of psychosocial services with families of youth with CHD (Sood et al., 2022).

The current study demonstrates several strengths, including building on the limited literature on siblings’ experiences with CHD, engaging a geographically and socioeconomically diverse sample of parents of young children with CHD, and collaborating with a community advisory council throughout the research process. Additionally, crowdsourcing is a novel approach for qualitative data collection in pediatric populations and sibling research. The use of a highly accessible online format in crowdsourcing can overcome logistical barriers to research participation and allows for families to reflect and build on each other’s responses (Sood, Wysocki et al., 2021).

However, there are limitations of this study. Although an algorithm was used to guide enrollment with the goal of achieving a diverse national sample, participation was limited to parents who had completed a pre-enrollment survey, excluding those who did not engage with this initial step. Despite targeted efforts to recruit a diverse sample of parents of youth with CHD, parents from racially/ethnically minoritized backgrounds were underrepresented in this study (i.e., 82% of parents identified as non-Hispanic White in the larger sample; Driscoll et al., 2023). Fluency in English was an inclusion criterion, which limits the generalizability of the findings to non-English speaking populations and may have contributed to the underrepresentation of certain demographic groups. Most parents in the sample were married, limiting the representation of different family structures. Although almost one-third of the sample consisted of fathers, they remain underrepresented in research (Phares et al., 2005), and the study themes may not fully capture their perceptions. CHD affects children across all racial and ethnic backgrounds (Bayne et al., 2023). With a more diverse and representative sample, we may have uncovered a broader range of experiences related to the impacts of CHD on siblings and the resources used to support them. For instance, cultural factors influence sibling relationships (Long et al., 2021) and parental adjustment (Gordillo et al., 2020; Long et al., 2015). Health disparities also have a profound impact on families and negatively contribute to outcomes such as parental stress (Lisanti, 2018), while sociodemographic factors shape families’ decisions about participating in sibling support services (Oberoi et al., 2020). Further research is crucial in examining the experiences of siblings of youth with CHD across diverse racial, ethnic, cultural, linguistic, and family backgrounds, and findings can inform the development of culturally sensitive interventions for siblings.

This study also only included parent perspectives of the experiences of their heart-healthy children. Much of the existing literature focuses on parents’ perspectives (Parker et al., 2020) and some research has demonstrated discrepancies between reports of parents and siblings of youth with CHD, such that parents reported more concerns than siblings and older siblings reported worse adjustment (Caris et al., 2018). Extant research has demonstrated that some siblings may not share their psychosocial concerns for fear of increasing parental distress in the context of childhood cancer (Brosnan et al., 2022). Therefore, studies specifically focused on siblings’ report of their own experiences is critically needed. Future research would also benefit from a longitudinal, multi-informant approach to examining siblings’ adjustment to CHD, which may include siblings (depending on their age) and parents’ perspectives. Longitudinal studies are necessary for understanding siblings’ adjustment over time and can help to identify siblings with elevated risk who need additional psychosocial supports. For example, Alderfer and colleagues (2023) explored cancer-related post-traumatic stress symptoms in a large, longitudinal sample of siblings of children with cancer and their parents; similar studies would be beneficial in examining sibling adjustment to CHD. Given siblings’ interactions across systems, input from other sources, such as extended family members, may be helpful when feasible, as siblings may have increased interactions with these individuals. Additionally, while our team has expertise in sibling supports, the CAC did not include a child life specialist despite their unique role in siblings services and should be included in future sibling research (Keller et al., 2023).

Taken together, parents described a variety of ways that CHD affects their heart-healthy children, including their psychosocial functioning, roles, responsibilities and relationships within the family, and need for support. According to parents, the experiences and outcomes for siblings of youth with CHD can be both positive and negative, and findings highlight the need for family-centered care in CHD. Variability in heart-healthy sibling responses to CHD suggests that psychosocial screening is important to identify siblings most at-risk and to provide appropriate levels of support tailored to meet specific needs of siblings and families impacted by CHD.