Congenital heart disease (CHD) is the most common birth defect in the United States, affecting approximately 40,000 (1%) live births each year, and 25% of these infants are born with critical heart disease requiring surgical and/or interventional procedures during their first year of life. 1 While advances in medical and surgical care have dramatically improved survival rates for infants and children with critical CHD, the psychological impact on parents managing long hospitalizations, uncertain outcomes, multiple procedures and appointments, and high medication burdens is concerning. Parents of children with CHD are at risk for mental health disorders, including depression, anxiety, and traumatic stress. Reference Woolf-King, Anger, Arnold, Weiss and Teitel2
Traumatic stress is the most prevalent form of psychological distress experienced by parents of children with heart disease. Reference Woolf-King, Anger, Arnold, Weiss and Teitel2–Reference Currie, Anderson, McCarthy, Burke, Hearps and Muscara4 Symptoms of traumatic stress have been reported at the time of diagnosis, during the hospitalization, and after discharge. Reference Woolf-King, Anger, Arnold, Weiss and Teitel2,Reference Franich-Ray, Bright and Anderson3 Thus, it is important for clinicians who interact with parents during all phases of care to understand the prevalence of and factors associated with traumatic stress. Early recognition of traumatic stress is essential to trigger additional support. This scoping review summarizes the current literature related to prevalence, related factors, and consequences of traumatic stress in parents of children with CHD. Gaps in knowledge and opportunities for future research are discussed.
Definition of traumatic stress
Trauma can be defined as “sets of circumstances that represent significant challenges to the adaptive resources of the individual and that represent significant challenges to the individuals’ way of understanding the world and their place in it.” Reference Tedeschi and Calhoun5 Traumatic medical events involving a child may trigger post-traumatic stress symptoms (PTSS) in parents, including re-experiencing, avoidance, and hyperarousal. Re-experiencing or thinking about the traumatic event can help with processing; however, flashbacks or nightmares may be intrusive or distressing and feel like one is reliving the trauma. Avoidance may be characterized as trying to stop thoughts or conversations about the trauma and may manifest new worries and fears. Additionally, while a new sense of caution may be appropriate after a traumatic event, these new fears and anxieties can be problematic if they interfere with daily life. Hyperarousal refers to an altered stress response, such that the response to a stimulus may be exaggerated and lead to physical symptoms of stress. Reference Golfenshtein, Lisanti, Cui and Cooper6–7 Symptoms of traumatic stress may meet diagnostic criteria for acute stress disorder (ASD) or post-traumatic stress disorder (PTSD). Reference Bevilacqua, Morini and Ragni8 ASD describes traumatic stress symptoms lasting up to 1 month after the traumatic event, whereas PTSD describes symptoms that last more than 1 month after the traumatic event. 9
Materials and methods
Framework
The Joanna Briggs Institute Scoping Review Framework was selected because of its detailed guidance, inclusiveness of qualitative research, and alignment with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses—Extension for Scoping Reviews (PRISMA-ScR). Reference Aromataris, Lockwood, Porritt, Pilla and Jordan10 Accordingly, the following steps were taken: (1) identifying the research question, (2) identifying relevant studies, (3) study selection, (4) charting the data, and (5) collating, summarizing, and reporting results.
Identifying the research question
The research team and a clinical librarian developed a protocol and research purpose to explore, “what is known about the prevalence, related factors, and consequences of traumatic stress in parents of children with heart disease?”
Identifying relevant studies
PubMed, PsycInfo, and Scopus databases were searched for relevant publications between 2000 and early 2024. Search terms used in PubMed were parent (mesh) and heart defects, congenital (mesh) and traumatic stress (tiab) or stress disorders, traumatic, and acute (mesh). PsychInfo search terms were parents or caregivers or mother or father or parent and CHD or cardiac defect or heart defect or CHD and traumatic stress or PTSD or ASD. Scopus search terms were congenital and heart and disease and parent and traumatic and stress or acute and stress and disorder.
This review included clinical trials, qualitative studies, and systematics reviews with samples that included parents of children with heart disease and measures or descriptions of traumatic stress. Exclusion criteria included studies of parents of children with exclusively non-cardiac illnesses or injuries, children with heart disease, adult patients with heart disease, and those that did not specifically examine traumatic stress. Bibliographies were also reviewed to find other relevant references. All publications were managed in Covidence.
Study selection and data abstraction
This search yielded 1492 studies. After 218 duplicates were removed, the title and abstract were screened on 1274 articles. Of the 1274 studies screened, 54 were included in the full-text review, and 11 were excluded for the wrong outcomes and 12 for the wrong patient population. Thirty-one articles were included in the final review. See Figure 1 for the PRISMA diagram of this process. One reviewer conducted the study selection and abstraction.
Flowchart of PRISMA diagram depicting the literature review and inclusion process.
Results
The articles (n = 31) were published between 2000 and early 2024, with 14 published since 2020. Twenty-five were clinical trials, three were qualitative studies, and three were review studies (see Table 1–3). Of the three review papers included, one published by Woolf-King and colleagues in 2017 focused specifically and exclusively on the mental health outcomes of parents of children with heart disease. Reference Woolf-King, Anger, Arnold, Weiss and Teitel2 This review cited five studies that focused specifically on traumatic stress and those were also included in this review. Two other review papers were included because their samples included parents of children with heart disease, one focused on parents of children with chronic physical illness and the other on parents of children following paediatric surgery. Reference Pinquart11,Reference Turgoose, Kerr and De Coppi12
Key findings of included quantitative studies (n = 25)
ASD = acute stress disorder; CHD = congenital heart disease; ED = emergency department; ICU = intensive care unit; PCICU = paediatric cardiac intensive care unit; PICU = paediatric intensive care unit; PTSD = post-traumatic stress disorder; PTSS = post-traumatic stress symptoms; QOL = quality of life; SV = single ventricle.
Key findings of included qualitative studies (n = 3)
ASD = acute stress disorder; CHD = congenital heart disease; ICU = intensive care unit; PICU = paediatric intensive care unit; PTSD = post-traumatic stress disorder.
Key findings of included review studies (N = 3)
ASD = acute stress disorder; CHD = congenital heart disease; ICU = intensive care unit; PTSD = post-traumatic stress disorder; PTSS = post-traumatic stress symptoms.
Prevalence
Traumatic stress symptoms have been identified in 25–88% of parents at the time of diagnosis of CHD. Reference Rychik, Donaghue and Denise13,Reference Davey, Lee and Manchester14 Rychik and colleagues found that 39% of pregnant mothers had PTSS after fetal diagnosis of CHD. Another study found that 85% of parents had PTSS 4 weeks after the diagnosis and 27.3% continued to have PTSS 4 months after diagnosis. Reference Currie, Anderson, McCarthy, Burke, Hearps and Muscara4 In a mixed methods study of 29 parents, 88% of mothers and 66% of fathers developed PTSD after prenatal diagnosis of hypoplastic left heart syndrome (HLHS), and 100% of mothers and 75% of fathers experience PTSD after postnatal diagnosis of HLHS. Reference Cantwell-Bartl and Tibballs15
After their child’s cardiac surgery, 83% of parents endorsed at least one symptom of traumatic stress, with mothers reporting higher levels of traumatic stress symptoms than fathers. Reference Franich-Ray, Bright and Anderson3 After the Norwood operation, 50% of mothers and 39% of fathers experienced PTSD. Reference Bainton, Trachtenberg and McCrindle16 In other reports, ASD was reported in 25% of parents 3–4 weeks after their child’s cardiac surgery. Reference Helfricht, Landolt, Moergeli, Hepp, Wegener and Schnyder17,Reference Landolt, Buechel and Latal18
Two studies found that 25% of parents met the criteria for PTSD at the time of hospital discharge. Reference Landolt, Buechel and Latal18,Reference Gaskin, Barron and Wray19 Other studies report 16–17% of mothers and 6–13% of fathers meet the criteria for PTSD at the time of hospital discharge. Reference Mortensen, Simonsen, Eriksen, Skovby, Dall and Elklit20–Reference Scrimin, Haynes, Altoè, Bornstein and Axia22 In one report, all parents of infants with single ventricle anatomy between Stage 1 and Stage 2 operations were noted to have PTSS at the time of discharge. Reference Gaskin, Barron and Wray19 One month after discharge, 33% of mothers and 18% of fathers had ASD. Reference Franich-Ray, Bright and Anderson3 Three months after surgery, 19% of parents reported PTSS. Reference Lisanti, Quinn, Chittams, Laubacher, Medoff-Cooper and Demianczyk23 Bainton and colleagues found that the prevalence of PTSD in parents of infants with single ventricle heart disease decreases in mothers (50–27%) and fathers (39–24%) between the Norwood operation and 16 months of age. PTSD lasting greater than 4 months was found in 9–25% of all parents of children with heart disease (see Table 1). Reference McWhorter, Christofferson and Neely24–Reference Farley, DeMaso and D’Angelo27
Stressors and symptoms
Lisanti et al. found that 3 months after discharge, postnatal diagnosis and parental role alteration predicted PTSS, as well as anxiety and depressive symptoms. Reference Lisanti, Quinn, Chittams, Laubacher, Medoff-Cooper and Demianczyk23 In their qualitative descriptive study, Harvey et al. described six themes extrapolated from mother’s journal entries related to stress, including feeling intense fluctuating emotions, navigating the medical world, dealing with the unknown, facing the possibility of a child dying, finding meaning and spiritual connection, and mothering through it all. Reference Harvey, Kovalesky, Woods and Loan28 These themes overlap with some of the themes described by Kosta et al. in their qualitative study exploring parental experiences after their infant’s cardiac surgery. These themes include uncertainty, structural and systemic issues related to the microenvironment within the unit and macro-environment within the hospital, relationships with staff, social networks, communication of important information, and individual coping strategies. Reference Kosta, Harms and Franich‐Ray29 Consistent with Harvey et al., Cantwell-Bartl et al. found that the main stressor for parents was fear of their child dying. Reference Cantwell-Bartl and Tibballs15 Other stressors described by Cantwell-Bartl and colleagues were the appearance of their child, ICU environment, hearing about their child’s poor prognosis and/or complications, and witnessing another child’s death (see Table 3).
Few studies reported on the prevalence of specific symptoms of traumatic stress; however, Bainton et al. found that intrusive thoughts and hyperarousal symptoms were the most commonly reported symptoms among parents. Reference Bainton, Trachtenberg and McCrindle16 Another study found that receiving a prenatal diagnosis compared to a postnatal diagnosis increased the likelihood of avoidance symptoms of mothers and fathers and hyperarousal symptoms in fathers. Reference Franich-Ray, Bright and Anderson3
Demographic factors associated with traumatic stress
Both mothers and fathers experience high levels of stress related to their child’s diagnosis, surgery, and recovery; however, more mothers experience PTSS than fathers. Reference Woolf-King, Anger, Arnold, Weiss and Teitel2,Reference Bainton, Trachtenberg and McCrindle16,Reference Mortensen, Simonsen, Eriksen, Skovby, Dall and Elklit20–Reference Scrimin, Haynes, Altoè, Bornstein and Axia22,Reference Cantwell-Bartl and Tibballs15,Reference Franck, Mcquillan, Wray, Grocott and Goldman30,Reference Wray, Cassedy, Ernst, Franklin, Brown and Marino31 (see Table 1) Mothers also experienced higher levels of PTSS. Reference Franich-Ray, Bright and Anderson3,Reference Franck, Mcquillan, Wray, Grocott and Goldman30,Reference Wray, Cassedy, Ernst, Franklin, Brown and Marino31 Golfenshtein and colleagues reported that at the time of hospital discharge, the number of PTSS was associated with parent education and insurance, and 4 months later, the severity of PTSS and PTSD was predicted by ethnicity and number of children in the household, respectively. Reference Golfenshtein, Lisanti, Cui and Cooper6 Mothers of very young children were also found to have higher levels of stress (see Table 1). Reference Mortensen, Simonsen, Eriksen, Skovby, Dall and Elklit20
Psychosocial factors associated with traumatic stress
Muscara et al. reported that psychosocial factors explained 36% of the variance in parents with ASD, compared to demographic factors that explained only 4.5% of the variance. Reference Muscara, McCarthy and Hearps32 Currie found that higher psychosocial risks, mediated by the stress response, were predictive of PTSS 4 months after diagnosis. Reference Davey, Lee and Manchester14 After fetal diagnosis, those who experienced denial or were unresolved to the diagnosis had higher rates of PTSD. Reference Rychik, Donaghue and Denise13,Reference Davey, Lee and Manchester14
Stokes et al. reported that parents' acute stress responses to unexpected complications during the hospitalization, including prolonged mechanical ventilation, were significantly associated with post-traumatic stress scores 2 years after the hospitalization. Reference Stokes, Muscara and Zannino33 Acute stress reactions explained 44% of the variance of parents' long-term PTSS. Reference Stokes, Muscara and Zannino33 Unexpected complications causing an acute stress response in parents had a greater impact on long-term mental health outcomes, including PTSD, than the patients’ diagnosis, perioperative factors, or demographics. Reference Stokes, Muscara and Zannino33 Several studies found that high levels of anxiety, reduced coping, perceived lack of social support, and low parenting satisfaction were associated with PTSD (see Table 1). Reference Pinquart11,Reference Turgoose, Kerr and De Coppi12,Reference Bainton, Trachtenberg and McCrindle16,Reference Helfricht, Landolt, Moergeli, Hepp, Wegener and Schnyder17,Reference Scrimin, Haynes, Altoè, Bornstein and Axia22 Helfricht et al. report that traumatic stress severity at the time of discharge was associated with PTSD after 6 months after discharge. Reference Helfricht, Landolt, Moergeli, Hepp, Wegener and Schnyder17 Additionally, parenting stress at discharge was associated with both the number and severity of PTSS. Reference Golfenshtein, Lisanti, Cui and Cooper6 Four months after discharge, parenting stress predicted PTSD. Reference Golfenshtein, Lisanti, Cui and Cooper6
Clinical factors associated with traumatic stress
Wray and colleagues examined over 2000 parents and described 2 pathways of psychological well-being of parents defined by the complexity of heart disease, specifically that parents of children with mild heart disease report fewer PTSS than parents of children with cardiomyopathy or single ventricle heart disease. Reference Wray, Cassedy, Ernst, Franklin, Brown and Marino31 This finding was consistent with another study of parents 4 months after discharge that found that having a child with single ventricle physiology was predictive of PTSD. Reference Golfenshtein, Lisanti, Cui and Cooper6 Complexity of surgery was associated with more acute stress symptoms in two studies Reference Pinquart11,Reference Scrimin, Haynes, Altoè, Bornstein and Axia22 and another found that specifically, fathers of children with high clinical acuity had higher levels of acute stress. Reference Mortensen, Simonsen, Eriksen, Skovby, Dall and Elklit20 However, other studies found little to no relationship between clinical variables and PTSS or PTSD (Table 1). Reference Helfricht, Latal, Fischer, Tomaske and Landolt21,Reference Stokes, Muscara and Zannino33,Reference Muscara, McCarthy and Thompson34 The number of infant medications at the time of discharge was associated with the severity of PTSS, and the need for tube-assisted feedings at discharge predicted PTSD. Reference Golfenshtein, Lisanti, Cui and Cooper6 Infant growth trajectory over the first 4 months was associated with PTSS and parenting stress. Reference Lisanti, Golfenshtein, Min and Medoff-Cooper35 Four months after discharge, the number of emergency visits was associated with the severity of PTSS. Reference Golfenshtein, Lisanti, Cui and Cooper6 In a recent study examining parent biomarkers of stress, Lisanti et al. found that parents' salivary cortisol area under the curve with respect to the ground measured at discharge predicted PTSS 3 months later. Reference Lisanti, Dong and Demianczyk36
Consequences of parental post-traumatic stress
Parents with full or partial PTSD were more likely to experience lower mental health-related quality of life. Reference Landolt, Buechel and Latal18,Reference Lisanti, Golfenshtein and Marino37 In a multivariable model, Lisanti et al. found that the combination of the relationship quality between partners, social support, parenting stress, and PTSS explained 74% of the variance in quality-of-life scores. Reference Lisanti, Golfenshtein and Marino37 Emergency room visits and unplanned visits to the cardiologist and primary care provider were associated with increased symptoms of PTSD (see Table 1). Reference Golfenshtein, Hanlon and Lozano3
Parent PTSS were also associated with overprotective parenting and subsequent emotional and behavioural problems among their children. Reference McWhorter, Christofferson and Neely24
Discussion
A stress response to a traumatic experience can be adaptive; however, persistent or intense symptoms may interfere with daily life and impact overall well-being and quality of life of parents of children with heart disease. The purpose of this scoping review was to report on what is known about traumatic stress in parents of children with heart disease. Studies sought to describe the prevalence, timing, associated factors, and consequences of traumatic stress. Periods of heightened traumatic stress for parents were identified at the time of diagnosis, during the hospitalization, and at the time of discharge. While the majority of parents report reduced PTSS over time, 16–25% of parents experience persistent PTSS lasting longer than 16 months. Reference Bainton, Trachtenberg and McCrindle16,Reference Farley, DeMaso and D’Angelo27,Reference Muscara, McCarthy and Hearps32 These findings reflect slightly higher rates than those recently reported by Whyte-Nesfield et al., who found that 12.5% of parents of children with unexpected PICU admissions experience PTSS 18–30 months post-discharge. Reference Whyte-Nesfield, Kaplan and Eldridge39 In a group of 159 parents of children from the PICU, oncology, or cardiology divisions, Muscara identified three distinct profiles of parents over an 18-month period and termed them resilient, recovery and chronic. Thirty-three percent of parents were described as resilient and experienced low distress through all time points. The recovery group accounted for 52% of parents who had high distress at the diagnosis that decreased with time over several months. The chronic group accounted for 13% of parents, and they experienced high levels of distress at all time points through 18 months.Reference Muscara, McCarthy and Hearps 32
Recognizing particularly vulnerable time points and factors associated with parent traumatic stress may prompt timely screening to facilitate risk stratification and tailored individualized interventions that optimize outcomes for parents and children with heart disease. Given the consequences of poor adjustment to the diagnosis, additional screening and psychological support may be warranted when communicating the diagnosis to parents. In their review paper, Tacy and colleagues illuminate the complex nature of counselling parents through a prenatal diagnosis of CHD, from the perspective of the provider and parents. Reference Tacy, Kasparian, Karnik, Geiger and Sood40 During these conversations, parents are processing new medical information, managing uncertainty, and experiencing psychological distress. These early conversations significantly influence the adjustment and psychological well-being of parents and families; however, training for providers and best practice have not been established. Empathetic and trauma-informed communication may support psychological adjustment to the diagnosis and a collaborative and trusting partnership between parents and providers. Reference Tacy, Kasparian, Karnik, Geiger and Sood40
The prevalence of PTSS during hospitalization and the sustained nature of these symptoms throughout admission warrant attention. Reference Franich-Ray, Bright and Anderson3,Reference Franck, Mcquillan, Wray, Grocott and Goldman30 Given the impact of the acute stress response on PTSD, the inpatient admission is an opportunity to identify parents at risk for ASD and PTSD and provide additional support to cope with the stress of the hospitalization. Psychosocial risks, including baseline anxiety, depression, poor coping, parental role alteration, parenting stress, lower education, and acute stress response, were commonly reported. While the complexity of the disease was not consistently reported as a risk factor, parents of children with single ventricle heart disease, tube-assisted feedings, and a high medication burden were at higher risk of developing PTSS. Reference Golfenshtein, Lisanti, Cui and Cooper6,Reference Mortensen, Simonsen, Eriksen, Skovby, Dall and Elklit20,Reference Gaskin, Barron and Wray19,Reference Wray, Cassedy, Ernst, Franklin, Brown and Marino31 Early recognition of risk can be achieved by building standardized screening and subsequent support programmes (see Table 1). Reference Currie, Anderson, McCarthy, Burke, Hearps and Muscara4,Reference Golfenshtein, Lisanti, Cui and Cooper6,Reference Rychik, Donaghue and Denise13,Reference Davey, Lee and Manchester14,Reference Bainton, Trachtenberg and McCrindle16,Reference Helfricht, Latal, Fischer, Tomaske and Landolt21–Reference Lisanti, Quinn, Chittams, Laubacher, Medoff-Cooper and Demianczyk23,Reference Stokes, Muscara and Zannino33,Reference Muscara, McCarthy and Thompson34,Reference Helfricht, Landolt, Moergeli, Hepp, Wegener and Schnyder17
Specific triggers of stress are also important to guide interventions. Infants and children in the ICU are fragile, require continuous monitoring, and are often connected to life-saving equipment. While necessary, this environment poses many barriers to healthy bonding and parenting and can trigger both traumatic and parenting stress. Consistent with qualitative findings, Reference Turgoose, Kerr and De Coppi12,Reference Cantwell-Bartl and Tibballs15,Reference Harvey, Kovalesky, Woods and Loan28 the Paediatric Cardiac Intensive Care Unit Parental Stress Model asserts that parental stress emerges from three specific categories of stressors: infant, parent, and environment. Reference Lisanti, Golfenshtein and Medoff-Cooper41 Exposure to these common stressors in the ICU setting combined with the significant challenges to one’s adaptation resources and the existential threats to their child’s well-being are a likely precursor to traumatic stress. Reference Cantwell-Bartl and Tibballs15,Reference Harvey, Kovalesky, Woods and Loan28,Reference Kosta, Harms and Franich‐Ray29 This framework may be useful to employ in the development of parent support programmes aimed at addressing acute stress in parents during their child’s hospitalization.
Finally, given the subset of parents that experience persistent PTSS, and even meet the diagnostic criteria for PTSD, screening and ongoing support are needed after hospital discharge. Screening for PTSS and recognition of psychosocial risk factors and specific sources of stress may help inform a tailored approach to providing necessary support. Addressing these specific needs of parents experiencing PTSS may reduce unplanned utilization of healthcare and support healthy parenting and child development. Reference McWhorter, Christofferson and Neely24,Reference Golfenshtein, Hanlon and Lozano38
Few psychological support interventions for parents of children with heart disease have been developed and tested, and only one measured traumatic stress. Reference Kasparian, Kan, Sood, Wray, Pincus and Newburger42 Medoff-Cooper and colleagues tested the effect of a telehealth home monitoring programme for parent-infant dyads discharged after neonatal cardiac surgery. Four months post-discharge, there was no significant difference in PTSD scores between the intervention and control group who received usual care. Reference Medoff Cooper, Marino and Fleck25
Other intervention studies focused on anxiety, depression, parenting stress, coping, worry, and quality of life. For example, Callahan et al. described the effect of early palliative care on parenting stress, anxiety, and depression. The intervention focused on four specific domains including bonding, feeding, memories and emotional support, and psychological and spiritual support. Reference Callahan, Steinwurtzel, Brumarie, Schechter and Parravicini43 Overall stress in the intervention group was decreased; however, there was no difference between anxiety and depression scores between the groups. Reference Callahan, Steinwurtzel, Brumarie, Schechter and Parravicini43 McCusker and colleagues developed a psychoeducational intervention that supported the mother-infant relationship, parenting skills, and emotional processing of their experience. Six months after the intervention, mothers in the intervention group demonstrated improvement in anxiety, worry, and appraisal of their situation. Reference McCusker, Doherty and Molloy44
In the neonatal intensive care unit (NICU), Ghaedi-Heidari and colleagues found that the mindfulness-based stress reduction intervention was associated with higher post-traumatic growth scores. Reference Ghaedi-Heidari, Izadi, Seyedbagheri, Ahmadi, Sayadi and Sadeghi45 The application of trauma-informed care and Adverse Child Experiences framework are emerging in the NICU literature; however, very few results are available related to the implementation of these strategies. Reference Sanders and Hall46–Reference Malin, Vittner and Darilek48
A significant gap exists with regard to interventions that support parents of children with heart disease through acute stress responses and traumatic stress symptoms. Additional research is needed to develop programmes to support parents through trauma and address the other known psychological consequences of parenting a child with heart disease, including parenting stress, anxiety, and depression. Reference Woolf-King, Anger, Arnold, Weiss and Teitel2 Given the impact of psychosocial factors on psychological outcomes, interventions tested in particularly vulnerable populations, for example, those with low levels of education, low resources, poor social support, and non-English speakers, are needed. Reference Lisanti49
Limitations
There are limitations of this scoping review to be acknowledged. Given that this was a scoping review and not a systematic review, the quality of the studies was not critically appraised, including the potential for bias. Various methodological approaches to studies were included, and different measures of traumatic stress were used across studies making comparisons difficult.
Future research
While research about traumatic stress in parents of children with CHD is limited, the body of evidence has grown substantially over the past 5 years, and findings are concerning for both parents and their children. Rates of traumatic stress among parents of children with heart disease are considerably higher than national rates Reference Franich-Ray, Bright and Anderson3,Reference Currie, Anderson, McCarthy, Burke, Hearps and Muscara4,Reference Golfenshtein, Lisanti, Cui and Cooper6,Reference Rychik, Donaghue and Denise13,Reference Davey, Lee and Manchester14,Reference Bainton, Trachtenberg and McCrindle16,Reference Landolt, Buechel and Latal18,Reference Mortensen, Simonsen, Eriksen, Skovby, Dall and Elklit20,Reference Helfricht, Latal, Fischer, Tomaske and Landolt21,Reference Gaskin, Barron and Wray19,Reference Lisanti, Quinn, Chittams, Laubacher, Medoff-Cooper and Demianczyk23,Reference McWhorter, Christofferson and Neely24,Reference Farley, DeMaso and D’Angelo27,Reference Golfenshtein, Hanlon and Lozano38,Reference Helfricht, Landolt, Moergeli, Hepp, Wegener and Schnyder17,Reference Price, Kassam-Adams, Alderfer, Christofferson and Kazak50 and contribute to negative outcomes for both parents and children. Reference Golfenshtein, Lisanti, Cui and Cooper6,Reference Landolt, Buechel and Latal18,Reference Helfricht, Latal, Fischer, Tomaske and Landolt21,Reference McWhorter, Christofferson and Neely24,Reference Lisanti, Golfenshtein, Min and Medoff-Cooper35,Reference Lisanti, Golfenshtein and Marino37,Reference Helfricht, Landolt, Moergeli, Hepp, Wegener and Schnyder17 Developing an understanding of the full psychological profile, including the factors related to post-traumatic growth in parents of children with heart disease, may help inform interventions that support trajectories towards healthy coping and growth. Reference McWhorter, Christofferson and Neely24,Reference Lisanti49,Reference Aftyka, Rozalska-Walaszek, Rosa, Rybojad and Karakuła-Juchnowicz51 Testing interventions that are informed by screening results and knowledge of the trajectory and triggers of traumatic stress will be important next steps. Reference Kasparian, Kan, Sood, Wray, Pincus and Newburger42 Interventions should aim to improve parent self-efficacy and support healthy coping when faced with acute stressors. Reference Lisanti49 Given the high rates of traumatic stress symptoms and the known triggers of stress during the hospitalization, this period of time may be an opportunity to modify the subjective experience and reduce the risk of developing traumatic stress symptoms. Reference Kasparian, Kan, Sood, Wray, Pincus and Newburger42 While impossible to alleviate the lifelong impact of CHD on parents and children, targeted interventions may create a foundation that fosters healthy adaptation to traumatic medical experiences.
Open access
