A Psychosocial Care Model for Families Affected by Congenital Heart Disease

Abstract

Objective:

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 well-being, 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 multi-dimensional 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.

Introduction

Pediatric critical illness has an enormous impact on families. Parents frequently experience mental health problems (e.g., anxiety, depression, traumatic stress) due to traumatic medical events and the demands of parenting a child with critical illness (1, 2). Family relationships and parenting style are also often affected (3, 4). Difficulties with parental mental health and family functioning influence child outcomes. Studies of families affected by congenital heart disease (CHD), the most common birth defect and a leading cause of birth defect-associated infant illness, have documented associations between parental mental health and child neurodevelopmental and behavioral outcomes (5–7). In many cases, parental mental health is a stronger predictor of child outcomes than medical or surgical factors (5, 6).

Fortunately, parental mental health symptoms are responsive to intervention. Studies across pediatric illness populations, including CHD, demonstrate that psychosocial intervention can prevent or reduce parental mental health symptoms and promote positive family and child outcomes, including parent-child bonding and attachment, feeding, child neurodevelopment, and school attendance (8–11). In addition to formal intervention, other opportunities exist to provide family-based psychosocial care to promote positive outcomes. Parents report benefits of healthcare providers asking about family wellbeing (12), with best practices encouraging providers to take an active role in addressing these needs (13).

Prior papers describe a range of psychosocial interventions and strategies to address parental mental health problems and promote wellbeing for families affected by CHD, often developed and tested within a single care center (10, 14). However, the most important components, or pillars, of family-based psychosocial care have yet to be defined. There is a need for an overarching model of family-based psychosocial care that can be flexibly applied across hospitals with varying resources. Parents with lived experiences are in an ideal position to help identify pillars of family-based psychosocial care. The present study used crowdsourcing methods to engage mothers and fathers of children with CHD across 42 US hospitals to develop a family-based psychosocial care model for CHD.

Materials and Methods

Participants and Recruitment

Participants were parents of children ages 1-7 years who underwent open-heart surgery for CHD during infancy. Bereaved parents of children born 1-7 years prior who died after heart surgery were also eligible. Participants were 18 years of age or older and English-speaking, with access to the internet on a computer, tablet, or mobile device.

Recruitment was conducted in two stages. First, a study announcement with the link to an online recruitment survey was distributed through social media channels of CHD patient/family advocacy organizations, networking within the CHD community, and direct contact with parents of children receiving cardiac care at Nemours Children’s Health. The survey collected basic demographic and clinical information and an email address from parents interested in participation. Next, 179 of the 249 parents who completed the recruitment survey were invited to enroll. These parents were identified using an algorithm that considered frequencies of each demographic and clinical characteristic to maximize diversity in backgrounds and experiences (i.e., maximum variation sampling). The algorithm prioritized parents with specific characteristics that were underrepresented among those who completed the recruitment survey: male gender, racial or ethnic minority, bereaved, education level less than 4-year college degree, urban or rural community, West or Northwest region of the US, child with two-ventricle cardiac physiology, and child currently age 6. Parents who signed electronic consent then completed a comprehensive demographic and clinical questionnaire and were instructed to set up a deidentified account on Yammer (Version 7.20, Microsoft Corporation, Redmond, WA), the social networking platform used for qualitative data collection. Parents not invited to participate were given information about the algorithm and thanked for their interest.

Procedures

Qualitative data were collected through Yammer using crowdsourcing, a methodology that facilitates collaboration with online groups to identify problems and propose solutions (15, 16). Crowdsourcing is increasingly used in health research to engage stakeholders in identifying unmet needs, barriers to care, and potential solutions (16–21). A stakeholder advisory council (SAC) consisting of multidisciplinary providers across four hospitals and parents of children with CHD also convened twice-monthly to provide guidance on study methodology and interpretation of results.

Over six months, open-ended questions were posted to participants within a private Yammer group for this study. The study team and SAC identified 10 domains potentially important for family-based psychosocial care (e.g., psychosocial intervention, peer support) based on literature review, clinical expertise, and lived experience and then generated 37 questions through an iterative process whereby participant responses to prior questions informed subsequent questions (eTable 1). Parents responded to questions through the Yammer app or by email. Parents could view each other’s responses and “like” or comment on these responses (i.e., interact as a “crowd”). Qualitative data consisted of all responses and dialogue. Procedures were reviewed and approved by Nemours Institutional Review Board (IRB#: 971204, Family psychosocial care model for congenital heart disease: A crowdsourced study) and were conducted in accordance with the Helsinki Declaration of 1975. Data collection was completed by August 2018, prior to the COVID-19 pandemic.

Data Analysis

Qualitative data were analyzed using an inductive thematic approach, focused on parents’ subjective perceptions, feelings, and experiences (22). Parent responses and dialogue were extracted from Yammer, uploaded into Dedoose (Version 8, SocioCultural Research Consultants, LLC, Los Angeles, CA), and reviewed by four raters (ES, JC, LGM, ACD) using open coding procedures. The qualitative codebook was developed through an iterative process involving discussions between team members regarding code application and input from the SAC. Four participants’ complete responses (148 total) were then independently coded by the four raters to establish inter-rater reliability. After achieving acceptable reliability (pooled Cohen’s kappa coefficient > 0.80), remaining responses were divided among the raters for coding.

Qualitative data assigned the “Emotional/Psychological/Struggles” code were included in analyses (773 responses from 100 parents). This code was applied to all responses relating to the emotional health or struggles of immediate family members (parents, child with CHD, siblings), including acute and long-term outcomes, factors that improved or worsened emotional health, and needs for support. Preliminary themes were summarized and shared with participants via Yammer and no modifications were suggested. Thematic patterns based on parent gender and family socioeconomic status (SES) (i.e., annual household income, parent education level) were investigated in an exploratory manner.

Results

Participants were 100 parents (72 mothers, 28 fathers) who provided qualitative data regarding family emotional health and needs (Table 1). Their children with CHD received care across 42 hospitals in 26 US states plus the District of Columbia. Participants were diverse regarding education level, household income, and geographic setting. However, most identified as married/partnered (95%) and Non-Hispanic White (82%).

Table 1.

Sociodemographic and Clinical Characteristics (N = 100)

Parent Characteristics	Frequency
Race/Ethnicity
Non-Hispanic White	82
Black or African-American	2
Hispanic/Latino	9
Asian	6
Education Level
High School/GED	29
Associates Degree	12
Bachelor’s Degree	29
Graduate Degree	30
Annual Household Income*
<$50,000	31
$50,000 - $99.999	28
$100,000 or more	39
Married/Partnered	95
Geographic Classification
Rural	25
Suburban	53
Urban	22
Child Characteristics	Frequency
Prenatal Cardiac Diagnosis	64
Single Ventricle Cardiac Physiology	53
Premature Birth	22
Suspected/Confirmed Genetic Syndrome	17
First Cardiac Surgery at less than 1 month	72
>1 Open Heart Surgery	71

Note. Given sample size of 100, frequency and percentage are equal.

^*Two participants declined to respond to this question; N = 98

Three broad themes corresponding to pillars of family-based psychosocial care (Figure 1) were identified from qualitative data: Pillar 1) Parent partnership in family-integrated medical care, Pillar 2) Supportive interactions focused on parent and family well-being, and Pillar 3) Integrated psychosocial care and peer support for parents and families. Each pillar is supported by subthemes corresponding to specific intervention strategies (eTable 2). Most parents (82%) described the need for intervention strategies across multiple pillars, with 46% reporting needs across all three pillars of psychosocial care. Parents’ preferences for psychosocial support changed over time (e.g., with changes to their child’s medical status) and across care settings (e.g., hospital, outpatient clinic).

Figure 1.

Model of Family-Based Psychosocial Care

Pillar 1: Parent partnership in family-integrated medical care.

Many parents discussed the importance of being treated as a partner in their child’s care and noted this enhanced their wellbeing. This pillar was supported by three subthemes: 1) inclusion in their child’s daily care, 2) clear and consistent communication about their child’s needs including opportunities to ask questions, and 3) inclusion in care-related decision making. Parents also identified missed opportunities to be involved in their child’s care and the negative impact this had on their wellbeing.

Many parents described the loss of a “normal” newborn experience as a significant stressor, and this stress was exacerbated by limited opportunities to hold, feed, and dress their child. Parents also described hesitancy to participate in their child’s care due to uncertainty about what was safe. They recommended that opportunities for early involvement in care be facilitated by healthcare providers (subtheme 1). Parents acknowledged their lack of medical knowledge and referred to healthcare providers as “experts” in their child’s care. They appreciated being consistently updated on their child’s medical status and being able to ask questions without feeling judged (subtheme 2). Parents also indicated that collaborating with the healthcare team on care-related decisions had a positive impact on their wellbeing (subtheme 3).

Parents from the lowest income bracket were somewhat more likely than those at higher income levels to describe an unmet need for consistent inclusion in their child’s care, frequently noting instances in which they felt excluded from medical decision making. Additionally, mothers were more likely than fathers to discuss the need for involvement in their child’s daily care (e.g., holding, feeding), while fathers were somewhat more likely to discuss the importance of inclusion in decision making. Fathers commented that the care team was more likely to reach out to their child’s mother regarding care-related decisions.

Pillar 2: Supportive interactions focused on parent and family well-being.

Many parents described helpful interactions with healthcare providers focused on parent and family well-being. This pillar was supported by three subthemes: 1) acknowledgement of the emotional impact of pediatric illness on the parent and family, 2) informal emotional “check-ins,” 3) and supportive, nonjudgmental communication and encouragement of parental self-care.

Many parents appreciated when healthcare providers acknowledged the challenges of parenting a child with CHD, especially following surgeries, during hospitalizations, and in the context of feeding challenges (subtheme 1). Parents expressed the benefits of having a provider ask “how are you doing?”, commenting that this question communicated the importance of parental wellbeing. They appreciated when conversation about parental wellbeing was initiated by providers (subtheme 2), as they did not feel comfortable bringing up the topic of mental health independently. Some parents commented that these conversations were more likely to happen at times when their child was medically unstable; however, they would also benefit from discussing their wellbeing at times when their child was doing well. It should be noted that not all parents expressed wanting a direct focus on parental wellbeing. Some stated they wanted their child to remain the sole focus and felt that intervention strategies described in Pillar 1 would meet their needs. Fathers were somewhat less likely than mothers to express wanting to discuss the emotional impact of CHD with providers.

While many parents described nonjudgmental communication and encouragement of self-care as important (subtheme 3), parents at lower education levels were most likely to emphasize this need. Many of these parents described negative experiences in which they felt judged by healthcare providers for prioritizing self-care or needing to spend time away from the bedside for other reasons (e.g., work, transportation challenges).

Pillar 3: Integrated psychosocial care and peer support for parents and families.

Many parents indicated they would have benefitted from formal psychosocial support provided by mental health professionals and peer mentors. This pillar of psychosocial care was supported by five subthemes: 1) early psychosocial assessment with a mental health provider to determine parent and family needs, 2) therapeutic intervention by a mental health provider, 3) provision of psychoeducational materials, 4) connection to other hospital-based supportive services, and 5) connection to peer support.

Some parents expressed wanting psychosocial assessment or consultation with a mental health provider (e.g., psychologist, social worker) soon after CHD diagnosis; this was particularly true for parents who received a prenatal diagnosis (subtheme 1). Parents reported wanting interventions to address family psychosocial needs, including encouragement of parental self-care and coping skills, support in their relationship with their partner, and assessment/treatment of mental health symptoms (subtheme 2). Many parents commented on the long-lasting emotional toll that early hospitalizations and surgeries placed on their family, indicating that early support may mitigate long-term mental health difficulties. They noted that, while their families’ specific needs may change, having access to a mental health provider over time and across settings was important. However, not all parents expressed wanting formal mental health care. Some felt that the intervention strategies described in Pillars 1 and 2 as well as other supports outside of the care setting (e.g., faith-based organizations, family/friends) would be sufficient in addressing their emotional needs.

Many parents discussed the benefits of receiving written psychoeducational materials (e.g., about stress responses, neurodevelopment) and having access to these materials long after hospital discharge (subtheme 3). Several parents also deemed hospital-based supportive services to be beneficial, including chaplains, child life specialists, and massage therapists (subtheme 4).

A majority of parents discussed the benefits of peer support. Parents who received peer support described this as integral to their coping, whereas those who did not stated they wished they had been connected to others with similar experiences (subtheme 5). Bereaved parents described the continued benefits of peer support long after their child’s passing. Notably, while mothers tended to discuss the interventions described in subthemes 1-4 at somewhat higher rates than fathers, both mothers and fathers mentioned the benefits of peer support at comparable, high rates.

Discussion

This study identified three pillars of psychosocial care to promote wellbeing for families of children with CHD. Most parents expressed a need for enhanced psychosocial support, although types of support differed among parents and across stages of care. Results indicate that a one-size-fits-all approach to psychosocial care for families affected by pediatric illness, including CHD, is not likely to be appropriate or effective.

All healthcare team members play an important role in providing psychosocial support (23). The first two pillars are provided primarily by members of the child’s medical team, including cardiologists, surgeons, and nurses. A multilayered approach to psychosocial care, in which all healthcare providers support family wellbeing through family-centered care, is proposed to contribute to child wellbeing (24, 25). However, identified barriers include time, appropriate training, and comfort (26). The Normalize-Ask-Pause-Connect clinical approach has been proposed as a method for proactively addressing child and family emotional health within pediatric healthcare (27). Additionally, resources are available through the American Board of Pediatrics Roadmap Project to assist healthcare professionals with addressing emotional health needs in additional to physical health needs (12). Medical training could be enhanced by instruction on initiating conversations about emotional health and providing emotional support. Supporting parents’ roles as primary caregivers is also a fundamental aspect of family-centered developmental care (28).

Patterns in needs for psychosocial support were identified based on SES. Specifically, parents with lower family income often described a need for greater inclusion as partners in their child’s care and frequently noted instances in which they felt excluded from medical decision making or judged for spending time away from the bedside. Prior research has shown that adult patients perceive that their SES affects their health care, including the treatment they receive, their access to care, and their interactions with healthcare providers (29). Additionally, research has demonstrated the negative impact of healthcare providers’ implicit bias on quality of care (30). SES has been identified as an important aspect to consider in cross-cultural patient-provider interactions, specifically with regards to shared decision making (31).

While many supports can be provided by the medical team, parents also described a need for formal mental health support (Pillar 3). This is consistent with studies indicating that parents want access to mental health intervention, including support in developing coping skills, facilitating communication with healthcare providers, and education about long-term psychological effects of CHD (32). The literature on mental health screening, diagnosis, and intervention for parents of critically ill children is growing; there is a need for programming that is individualized to meet families’ unique needs (33). As emphasized by parents in this study, it is important that healthcare teams provide access to these resources for families, such as through the integration of mental health providers within healthcare teams to ensure accessibility and clinician understanding of the child’s illness (33).

Most parents discussed positive experiences with or desire for peer support. Peer support has been associated with improvements in parenting satisfaction, parenting self-efficacy, and wellbeing for parents of children with complex medical conditions (34). Further, parents have described providing support to others as rewarding (35). Structured peer mentorship programs in the context of pediatric critical illness have been evaluated (36, 37), and have been found to be beneficial to affected families, those serving as peer mentors, and healthcare providers. Based on current results, peer support may be particularly important for parents at the time of CHD diagnosis. Symptoms of anxiety, depression, and traumatic stress are common for mothers following a CHD diagnosis (1) and the initiation of peer support at this time may mitigate symptoms by reducing social isolation, normalizing emotional experiences, and aiding parents in preparing for their child’s care. While mothers in this study tended to be more interested in formal mental health supports, both mothers and fathers discussed the need for peer support at a high rate. Of note, other studies have reported low rates of peer support utilization among fathers of children with CHD (38). It is possible that fathers desire a different form of peer support than mothers or that fathers’ competing demands (e.g., working, caring for siblings) limit their access to peer support. It is important that healthcare teams provide access to peer support resources, with consideration for how peer support can be made more accessible for fathers.

Prior research suggests that mothers and fathers experience the stress of CHD differently (39). Fathers often described an unmet need for inclusion in medical decision making. This is not unique to parenting a child with CHD; fathers of children with developmental disabilities perceive challenges obtaining information about their child’s medical status (40). Healthcare teams should ensure that all parents have opportunities to receive information, ask questions, and participate in care-related decisions. This may promote the wellbeing of fathers and also reduce the burden on mothers to relay medical updates to other caregivers.

While socioeconomically and geographically diverse, this sample was not representative of the population of parents affected by CHD with regard to race or ethnicity. Further, participants were English-speaking and literate, with internet access. Patterns based on parent gender and SES were investigated in an exploratory manner and nuances likely exist that could not be identified based on the composition of the sample and restricted range on certain sociodemographic characteristics. Experiences with and need for specific components of psychosocial care likely differ across subgroups and should be evaluated through future research and assessed as part of routine clinical care. Lastly, this study was conducted prior to the COVID-19 pandemic and additional psychosocial needs may have been identified by families during and following the pandemic.

Conclusions

This study highlights the importance of psychosocial care that is multi-layered and can be individualized to meet the unique needs of families of children with critical illness. While the sample was exclusively parents of children with CHD, this model of family-based psychosocial care could likely be applied across pediatric critical illness groups. Future research incorporating components of implementation science can promote uptake of these findings (41), with the goal of optimizing psychosocial support to promote family and child wellbeing.

Key Points.

Research in Context

• Pediatric critical illness impacts parental mental health and family wellbeing, which in turn, affects child outcomes.

• A model of family-based psychosocial care that can be flexibly applied across hospitals with varying resources is needed.

• Parents with lived experiences are in an ideal position to help identify pillars of family-based psychosocial care.

What this Study Means

• Results support a model of family-based psychosocial care that is multi-layered and can be individualized to meet the unique needs of families of children with critical illness

• All members of the healthcare team play an important role in providing psychosocial support.

• Future research incorporating components of implementation science can promote uptake of these findings, with the goal of optimizing psychosocial support to promote family and child wellbeing.