Barriers and Facilitators to Discussing Parent Mental Health within Child Health Care: Perspectives of Parents Raising a Child with Congenital Heart Disease

Abstract

This study aimed to identify barriers and facilitators to discussing parent mental health within child health care for parents of children with congenital heart disease (CHD). Seventy-nine parents of young children with CHD who received care across 40 hospitals in the United States responded to questions about barriers and facilitators to discussing their mental health with their child’s health care providers. Responses were analyzed using qualitative research methods. Parents described multiple barriers: 1) belief that parent mental health support was outside the care team’s scope of practice, 2) perceived expectation to “stay strong,” 3) fear of negative judgment or repercussion, 4) individual preferences for communication/support, 5) desire to maintain care resources on their child, 6) perceived need to compartmentalize emotions, and 7) negative reactions to past emotional disclosure. Parents also described several facilitators: 1) confidence in the care team’s ability to provide support, 2) intentional efforts by the care team to provide support, 3) naturally extroverted tendencies, and 4) developing personal connections with health care providers. It is important that health care providers normalize the impact of child illness on the family and create an environment in which parents feel comfortable discussing mental health challenges.

Introduction

Congenital heart disease (CHD) is the most common birth defect and a leading cause of birth defect-associated illness and death (Oster et al., 2013; van der Linde et al., 2011). Approximately 25% of children born with CHD have a complex form of the disease that necessitates cardiac surgery and hospitalization in the first year of life (Oster et al., 2013). These children often have high care needs at home and experience neurodevelopmental, emotional, and/or behavioral difficulties (Marino et al., 2012; Dahlawi et al., 2020).

Parent mental health is substantially affected by diagnosis and management of CHD (Ahn and Lee, 2018; Ernst et al., 2018; Woolf-King et al., 2017). A systematic review of mental health symptoms in parents of children with CHD found that over 80% of parents report clinically significant symptoms of post-traumatic stress, 30% to 80% report severe psychological distress, and 25% to 50% report depression and/or anxiety (Woolf-King et al., 2017). Parent mental health problems are associated with an increased risk of emotional and behavioral difficulties and poorer health-related quality of life in children with CHD (DeMaso et al., 2017; Denniss et al., 2019; Ernst et al., 2018). Furthermore, parent mental health has been found to be a stronger predictor of child neurodevelopmental and psychosocial outcomes than medical or surgical factors (DeMaso et al., 2017, McCusker et al., 2013).

Recent papers emphasize that conversations about child and parent mental health should occur early and often as part of routine care for pediatric illness, including CHD (Boat et al., 2017; Kasparian et al., 2019; Pickles et al., 2020; Utens et al., 2018). Child health care providers report barriers to initiating conversations about mental health, such as insufficient training and knowledge in discussing mental health issues and limited referral resources (Habis et al., 2007; Wissow et al., 2016). In response, tools and resources to address provider-reported barriers (sample conversation scripts, brief training videos) have been developed (Pickles et al., 2020).

Parents likely also experience barriers to engaging in conversations about mental health with their child’s health care providers, particularly when these conversations relate to their own mental health. Parents of children with chronic conditions sometimes have difficulty acknowledging feelings of stress and may underreport symptoms (Pickles et al., 2020). Studies, however, have not formally evaluated barriers to engaging in conversations about parent mental health for parents of children with critical or chronic illness. Without an understanding of barriers and facilitators experienced by parents, these important conversations are not likely to be effectively integrated into routine care for pediatric illness including CHD.

Aim

To identify barriers and facilitators to discussing parent mental health within child health care for parents of children with CHD.

Methods

Population and Recruitment

The present study was nested within a larger qualitative study that used online crowdsourcing methods to generate recommendations for family-based psychosocial care for children with CHD (Sood et al., 2021). Inclusion criteria for the larger study were 1) being the parent to a child born with CHD one to seven years prior who underwent open-heart surgery within the first year of life (including bereaved parents), 2) age 18 or older, 3) ability to read and write in English, and 4) access to the internet on a computer, tablet, or mobile device. Parents whose child underwent his/her first open-heart surgery after the first year of life (i.e., indicating a milder form of CHD) were excluded.

Over one week, a study announcement containing the direct link to a brief online recruitment survey was posted to social media pages of several CHD-specific patient and family advocacy organizations in the United States (e.g., Conquering CHD, Sisters by Heart, Mended Little Hearts). This 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. Targeted recruitment for racial and ethnic minorities and fathers, groups that were underrepresented among completed surveys, was then conducted through social media, emails to those who already completed the recruitment survey encouraging them to spread the word about the study, networking within the CHD community, and direct contact with parents of children receiving cardiac care within Nemours Children’s Health.

Following recruitment, a subset of parents who represented maximum variation in backgrounds and experiences were identified and invited to review an electronic consent form for the larger study and to enroll (i.e, maximum variation sampling) (Palinkas et al., 2015). An algorithm was applied that considered frequencies of each demographic and clinical characteristic among those who completed the recruitment survey, and all parents with any of these characteristics were invited as they were represented at lower frequencies among those who completed the survey: racial or ethnic minority, male gender, bereaved, education level lower than Bachelor’s degree, urban community, West or Northwest region of the United States, or child currently age six. Next, due to an underrepresentation of parents from rural communities and whose child had two-ventricle cardiac physiology in this group, all parents who had both characteristics were invited. Lastly, all parents with a Bachelor’s degree whose child had two-ventricle physiology were invited. This study was reviewed and approved by Nemours Children’s Health Institutional Review Board (IRB# 971204) prior to initiating any study procedures. Procedures were in accordance with ethical principles of the Belmont Report.

Procedures and Measures

A stakeholder advisory council consisting of six multidisciplinary providers from four pediatric hospitals and four parents of children with CHD convened twice-monthly to provide guidance on study methodology and interpretation of results. Qualitative data were collected through online crowdsourcing, an innovative methodology that facilitates large online groups to identify problems and propose solutions that serve to benefit the larger community (Brabham, 2013; Sood et al., 2021). Crowdsourcing is increasingly used in health research to efficiently engage stakeholders in identifying unmet needs, barriers to care, and potential solutions (Cushing et al., 2018; Gramszlo et al., 2020; Hilton and Azzam, 2019; Hoffman et al., 2020; Pierce et al., 2017; Wray et al., 2018).

Participants created deidentified accounts on Yammer (Version 7.20, Microsoft Corporation, Redmond, WA), an online social networking platform, and were invited to join a private group where 37 open-ended study questions were posted over a six-month period. The study team and stakeholder advisory council generated study questions through an iterative process whereby participant responses to prior questions informed subsequent questions. Five questions were specifically aimed at understanding parents’ experiences with assessment and discussion of parent mental health and family needs within child health care as well as perceived barriers and facilitators: 1) 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? 2) How, when, and with what frequency do you wish that anyone from your child’s care team had assessed your level of stress and coping? Why? 3) How comfortable have you felt sharing your level of stress and coping with your child’s care team? Why or why not? 4) 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? 5) What could your child’s care team have done to better understand you and your family? The remaining 32 questions captured other relevant psychosocial domains (e.g., education and preparation, peer-to-peer support, grief and loss; Sood et al., 2021). Parents responded to study questions through the Yammer app on their tablet or mobile device or by email. To facilitate collaboration between participants, parents could view each other’s responses and “like” or comment on these responses. Qualitative data were comprised of all responses and dialogue between participants.

Data Analysis

Descriptive statistics (frequency counts, percentages) were used to describe characteristics of participants and their children with CHD. Qualitative data were analyzed using an inductive thematic approach, focused on parents’ subjective perceptions, feelings, and experiences (Braun and Clarke, 2006). Parent responses and dialogue were extracted from Yammer, uploaded into Dedoose (Version 8, SocioCultural Research Consultants, LLC, Los Angeles, CA), and independently reviewed by four coders (ES, JC, LGM, ACD) using open coding procedures. The qualitative codebook was developed over several months through an iterative process that involved discussions between team members regarding code identification and application and incorporated input from the stakeholder advisory council. During these discussions, code applications were clarified and the codebook was refined. Upon finalizing the codebook, four participants’ complete responses (148 total responses) were 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 four raters for independent coding.

Qualitative data focused on barriers and facilitators to discussing parent mental health with child health care providers were included in the present analyses: 1) all responses to the question “How comfortable have you felt sharing your level of stress and coping with your child’s care team? Why or why not?”; 2) responses coded as “screening/assessment” (to capture responses describing formal or informal assessment of parent mental health and family needs, or lack thereof); and 3) responses coded as “emotional/psychosocial/struggles” (to capture responses related to mental health and emotional struggles). Themes identified from these data were summarized and shared with parent participants via Yammer as a mechanism for member checking. No modifications were recommended by parent participants.

Findings

Participant Characteristics

The online recruitment survey was completed by 249 parents over a one-week period, and 179 parents who represented maximum variation in backgrounds and experiences were invited to enroll in the larger study. Of these, 108 (60%) enrolled and participated in the larger study, and 79 (44% of those invited, 73% of those enrolled) contributed responses regarding barriers and facilitators to discussing parent mental health with their child’s providers and were included in present analyses. Characteristics of the 79 participants (56 mothers, 23 fathers) are displayed in Table 1. Participants did not differ significantly from those in the larger sample who were not included with regard to sex, race, ethnicity, education level, or annual household income. Participants’ children with CHD received care across 40 hospitals in the United States.

Table 1.

Sociodemographic and clinical characteristics (N = 79)

Parent Characteristicsa	Frequency (%)
Relationship to child
Mother	56 (70.9)
Father	23 (29.1)
Age, years
22–29	10 (12.6)
30–39	53 (67.1)
40–47	15 (19)
Race/ethnicity
Non-Hispanic white	69 (87.3)
Black or African-American	3 (3.8)
Hispanic/Latino	3 (3.8)
Asian	2 (2.5)
Education level
High school	24 (30.4)
Associates degree	10 (12.7)
Bachelor’s degree	21 (26.6)
Graduate degree	24 (30.4)
Annual household income
<$50,000	23 (29.1)
$50,000 - <$100,000	25 (31.6)
$100,000 or more	30 (38.0)
Geographic classification
Rural	20 (25.3)
Suburban	43 (54.4)
Urban	16 (20.3)
Child Characteristicsa
Current age, yearsb
1–3	45 (57.0)
4–6	26 (33.0)
Single ventricle cardiac physiology	41 (51.9)
First cardiac surgery < 1 month old	58 (73.4)
Number of cardiac surgeries
1	20 (25.3)
2	30 (38.0)
≥ 3	28 (35.5)
Days in hospital - first surgical admissionc	42.8 (41.3)
Days in hospital - first year of lifec	74.4 (61.3)

^aMissing data (age: 1 [1.3%]; race/ethnicity: 2 [2.5%]; annual household income: 1 [1.3%]; number of cardiac surgeries: 1 [1.3%])

^b8 (10.1%) children of participants were deceased

^cMean and standard deviation reported.

Barriers to Discussing Parent Mental Health

Parents described barriers to discussing their own mental health as part of their child’s health care across seven broad themes. These themes are described below in descending order based on their frequency within the qualitative data. Supplemental File 1 reports the total number of participants and percentages of mothers and fathers whose responses support each theme, along with additional representative quotes.

Belief that parent mental health support was outside the care team’s scope of practice

Many parents reported that they did not consider parent mental health support to be within the skill set of their child’s health care providers. As stated by one mother:

“I think I never broached the subject because I don’t view it to be something within their scope of practice to do anything about.” Participant ID 141

Despite frequent contact with providers, parents indicated that they were rarely asked how they were feeling or coping. Actual or perceived lack of resources available for parent mental health precluded emotional disclosure and support seeking behaviors.

Perceived expectation to “stay strong”

Many parents described a perceived expectation to “stay strong,” which was largely driven by external pressures and values to maintain a fighting attitude. Parents often reported hiding intense emotional struggles in order to maintain a brave face for their children, family, community, and health care team. Some parents described perceived expectations for men to stifle emotions and to serve as the “rock” of the family, which further limited emotional expression. One father noted:

“It is not always acceptable for men/dads to express emotions, particularly sadness and fear over our child’s condition. Several times I have had to hold it all inside and stay strong for my wife and child.” Participant ID 39

Fear of negative judgment or repercussion

Parents commonly reported concern that emotional expression would be used as a proxy for parental ability to care for their child. Many parents described a power differential between the care team and parents/families. They cited fears that emotional vulnerability would lead to restricted involvement in their child’s health care or unsolicited mental health interventions (e.g., psychotropic medication) that they felt could impair their caretaking abilities. Parents described tempering their emotional reactions to maintain maximum involvement in the care of their child. One mother commented:

“It was hard for me to share my feelings and to admit I was struggling. I was afraid of judgment or that they would think I couldn’t care for my child.” Participant ID 92

Individual preferences for communication and support

Individual differences in preferences for communication and support influenced parents’ willingness to discuss mental health with their child’s health care providers. Some parents explained that communicating with new people (e.g., health care providers) about their mental health felt uncomfortable due to their introverted tendencies. As stated by one father:

“I’m not a big talker of my feelings by nature so I tend to find it more annoying when people ask.” Participant ID 6

Other parents reported a preference to utilize preexisting social networks outside of the health care setting for emotional support (e.g., family members, friends, religious communities, mental health professionals) rather than discussing mental health with their child’s health care providers. In some cases, parents described utilizing external supports as a way to maintain the focus on caring for their child in the hospital environment. In other cases, parents perceived that their external supports were better equipped to provide emotional support than their child’s health care providers or noted that confiding in external supports felt more comfortable and appropriate.

Desire to maintain care resources on their child

Parents prioritized caring for their child over their own needs. The threat of detracting attention or resources from their child’s care served as a major deterrent to seeking support from their child’s care team. Parents felt that the care team was responsible for the health of their child. In the context of their child’s fight for survival, some parents reported feelings of selfishness for focusing attention on themselves and minimized their own struggles as trivial, unimportant, or unworthy. One father commented:

“They were so busy caring for our daughter and all the other patients. It seemed trivial to bug them about our stress.” Participant ID 64

Perceived need to compartmentalize emotions

Parents described keeping their guard up and distancing themselves from their emotions as protective mechanisms to maintain stability in the face of extreme stress. Some parents reported concern that they may not recover and may not be equipped to care for their child were they to face and experience the full extent of their emotions. Some parents also noted that the hospital or clinic did not seem to be an appropriate or conducive environment for possible emotional collapse. One mother noted:

“I did not feel comfortable discussing my level of stress with them because my stress was on a terrifying level. I tried to keep it to myself.” Participant ID 104

Negative reactions by health care providers to past emotional disclosure

Prior negative experiences served as a barrier to future discussion about parent mental health. Some parents reported that they attempted to initiate discussion about their own mental health with their child’s health care providers, but felt “brushed off” or received unhelpful, superficial responses. As described by one mother:

“When I would let my guard down and attempt to articulate how much stress I was under, I consistently felt brushed off… No one felt invested in our well-being or explained how important it was for us to be mentally secure to be the best parent. It was never said it was okay to grieve and when we did, it was discouraged.” Participant ID 14

Verbal and nonverbal responses that were perceived as disinterested or unsupportive discouraged parents from disclosing these concerns again, even to different members of the care team.

Facilitators to Discussing Parent Mental Health

Parents described facilitators to discussing their own mental health during their child’s health care across four broad themes. These themes are described below in descending order based on their frequency within the qualitative data. Supplemental File 2 reports the total number of participants and percentages of mothers and fathers whose responses support each theme, along with additional representative quotes.

Confidence in the care team’s ability to provide support

Many parents reported that their level of confidence in a care provider’s ability to provide support (based on both professional qualifications and personal interaction style) influenced whether they discussed their own mental health with this provider. As stated by one father:

“I felt very comfortable expressing our concerns and level of stress as it seemed like those involved did understand. Most of our care team had been doing this for many years so they understood what level of stress parents have.” Participant ID 155

Parents were more likely to engage in emotional disclosure when they perceived support of their own mental health as an important component of their child’s care, and therefore, within the scope of practice of their child’s health care providers.

Intentional efforts by the care team to provide support

Parents reported that proactive, explicit efforts by health care providers to initiate discussion about parent mental health created an environment in which they were more likely to engage in emotional disclosure. The experience of having providers recognize and normalize parent mental health difficulties provided parents with opportunities to discuss their own needs within the context of their child’s care. One mother noted:

“Any time I’ve been asked questions on how I am coping, I have felt that was an opportunity to share my experience. I haven’t felt comfortable bringing it up on my own, however. It’s powerful to be asked how you are doing.” Participant ID 51

Naturally extroverted tendencies

Parents who reported a natural predisposition for openness and extroversion tended to maintain this preference in the health care setting. Some parents noted that their extroverted tendencies facilitated discussions about mental health and reported that these discussions helped them to cope with stress. One father commented:

“My personality is more extroverted in general anyways, and I am not afraid to share what is on my mind or heart. Letting this out and talking about it is very helpful to me because I don’t “bottle it up” to fester for months upon months.” Participant ID 77

Developing personal connections with health care providers

Consistency of and closeness with providers helped to facilitate trust and partnership in care. Some parents reported that personal connections that humanized health care providers (e.g., personal anecdotes) increased their willingness to discuss their own mental health. As stated by one mother:

“I was very comfortable with most of her team. We became so close because we were all fighting for my daughter. I couldn’t have survived without them and their love for my family.” Participant ID 121

Discussion

This study used crowdsourcing to engage parents of children with CHD from across the United States to identify barriers and facilitators to discussing their own mental health with their child’s health care providers. Parents of children with CHD frequently experience mental health symptoms and psychological distress that can influence child and family wellbeing (Woolf-King et al., 2017; DeMaso et al., 2017; Ernst et al., 2018; Ahn and Lee, 2018). Recent papers recommend that conversations about parent mental health occur as part of routine care for CHD and other pediatric illnesses (Boat et al., 2017; Kasparian et al., 2019; Pickles et al., 2020; Utens et al., 2018). This study identified seven types of barriers to parents discussing their own mental health with their child’s health care providers. These barriers need to be addressed before conversations about parent mental health can be seamlessly integrated into child health care.

One of the most frequently cited barriers to emotional disclosure was a belief that parent mental health was outside of the care team’s scope of practice. Consistent with previous research (Cooke et al., 2012; Megnin-Viggars et al., 2015), parents perceived the role of health care providers as limited to strictly physical rather than mental health concerns and to the care of the child rather than the family as a whole. Provider behavior likely exacerbates these expectations, as child health care providers have commonly reported feeling uncomfortable and unprepared to identify and treat behavioral health symptoms (Horwitz et al., 2017).

Conversely, intentional efforts by the care team to provide support by initiating conversations about mental health facilitated emotional disclosure among parents in the present study. This finding is consistent with prior research indicating that certain provider behaviors, such as asking questions about social and emotional functioning or utilizing formal psychosocial assessment tools, can increase parents’ willingness to disclose concerns (Edge et al., 2011; Slade et al., 2010). Child health care providers should introduce their role in caring for parents and families as part of a family-centered care model. They should engage in systematic efforts to identify parent mental health concerns through methods such as directed questions and psychosocial screening, in accordance with existing recommendations regarding the recognition and management of perinatal depression (Earls et al., 2019).

Previous research has demonstrated that women in the antenatal or postnatal period are less likely to communicate their psychological distress when they perceive that their providers are unwilling to listen or dismissive of these concerns (Megnin-Viggars et al., 2015). In the present study, identified barriers such as a perceived expectation to “stay strong” and negative reactions by health care providers to past emotional disclosure, reinforce that reactions by health care providers can influence whether parents choose to engage in such discussions. Conversely, confidence in the care team’s ability to provide support served as a facilitator to mental health disclosure among parents in the present study. These findings are consistent with research that highlights the importance of well-informed, empathetic, and non-judgmental responses to mental health disclosure (Slade et al., 2010; Turner et al., 2010). Pediatric health care providers should receive training in responding to parent mental health concerns and connecting parents to appropriate resources (Boat et al., 2017; Earls et al., 2019). Current consensus recommendations regarding family-centered psychosocial care for children with CHD emphasize the importance of a multidisciplinary team that includes providers with specialized training in mental health (e.g., psychologist, social worker) (Utens et al., 2018).

Parents in this study were often concerned with the perceived risks of discussing their mental health with health care providers (e.g., taking resources away from child, losing access to participation in care, inability to regain composure after emotional disclosure). This is consistent with previous findings documenting a tendency for postnatal mothers to avoid conversations about emotional topics within the health care setting in order to prevent unwanted outcomes, such as stigma or loss of custody (Megnin-Viggars et al., 2015). Parents in the present study, however, described that they were more likely to engage in these vulnerable discussions when they believed that their mental health care was important for their child’s outcomes. Health care providers can normalize common emotional reactions, emphasize the importance of focusing on parent mental health within the context of pediatric illness including CHD, and provide education about the role of parent mental health in promoting positive child outcomes (Boat et al., 2017). This important aspect of care may help to reduce stigma and facilitate parent disclosure about emotional health (Pickles et al., 2020), without detracting from child-focused resources.

Individual differences in preferences for communication and support served to promote or inhibit emotional disclosure. These findings demonstrate that there is no one size fits all approach to psychosocial care for parents affected by CHD and are consistent with numerous prior studies documenting the importance of culturally relevant, individualized treatment approaches (Alegria et al., 2010; Hall et al., 2016; Kazak et al., 2010; Smith et al., 2011). Providers should be mindful and respectful of individual preferences by considering social and cultural factors that may impact emotional disclosure and by offering diverse options for psychosocial support, including formalized peer support and pastoral care.

Study Limitations

The majority of participants identified as non-Hispanic White mothers and just over half reported an education level of Bachelor’s Degree or higher. Although efforts were made to promote sample diversity through targeted recruitment of underrepresented groups and use of an algorithm focused on maximum variability in backgrounds and experiences, the primary mode of recruitment was through social media pages of patient/family advocacy organizations where minorities and fathers may be underrepresented (Long et al., 2015; Wray et al., 2018). Future research is needed to determine whether barriers and facilitators identified in this study are experienced by parents from diverse racial, ethnic and cultural backgrounds, with particular attention to the role of provider-parent interactions in racial and ethnic health disparities (Valenzuela and Smith, 2015). This study focused on parents’ reflections on prior experiences and did not include direct assessment of provider behavior. Frequency of interaction with health care providers was also not assessed. Future studies involving direct assessment of provider behavior and parent disclosure, as well as frequency of contact between provider and parent, would further our understanding of the dynamic and bidirectional interaction between health care provider and parent (Fine et al., 2010). Finally, the range of available psychosocial services, including bereavement care, differs across hospitals and regions (Whitney and Peterson, 2019). These differences may have contributed to variability in parental experience, but were not directly measured.

Implications for Practice

Results of this study underscore the importance of health care providers incorporating a focus on mental health in addition to physical health within their clinical care. Pediatric health care providers should normalize common difficulties, ask open-ended questions, and engage in non-judgmental listening to communicate to parents that mental health is a topic that can and should be discussed within pediatric health care and that it is safe and appropriate to disclose mental health challenges (Boat et al., 2017). Intentional efforts by trusted health care providers to understand the lived experiences of parents affected by pediatric illness and provide support can facilitate early identification of mental health challenges warranting intervention (Pickles et al., 2020). Referrals and linkages to hospital and community based psychosocial supports when needed may further promote parents’ confidence that their family’s needs can be met through the pediatric health care system.

Conclusion

There is a critical need for mental health support for parents affected by CHD to promote child and family wellbeing (Kasparian et al., 2019; Utens et al., 2018). Resilience focused initiatives such as the American Board of Pediatrics Roadmap to Resilience, Emotional, and Mental Health Project aim to provide health care providers with tools to promote emotional and mental health in children with chronic illness and their parents and families (Pickles et al., 2020). The present study sheds light on specific, parent-identified barriers and facilitators to engaging in discussions about parent mental health that can help to inform these efforts. Resources and tools focused on directly addressing barriers and facilitating discussions about parent mental health should be an important priority for pediatric care teams working to promote physical and emotional health in children with CHD and their families.

Glossary

Abbreviations

CHD

congenital heart disease