Promoting Mental Health for Parents of Children with Heart Conditions

Developed by: Cheryl Brosig, PhD, Herma Heart Center, Children’s Hospital of Wisconsin, Milwaukee, WI
Erica Sood, PhD, Nemours Cardiac Center, A.I. duPont Hospital for Children, Wilmington, DE

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Pediatric heart problems can have a huge impact on parents and families. It is common for parents to feel scared and overwhelmed when learning about their child’s heart problem or during hospitalizations. It is also common for parents to feel alone at times, as stress can affect how family members communicate with and support one another. For many parents, stress decreases as the child’s health improves and the family settles into a routine at home. However, some parents and families continue to struggle emotionally long after the child’s health has improved. Research studies indicate that parents of children with heart problems often experience difficulties with anxiety, depression, and traumatic stress related to upsetting aspects of the child’s medical course.1 Parents with financial challenges and less social support may be at greater risk for emotional difficulties. However, even parents with high levels of support can struggle emotionally.

Why is parent mental health important?

Parent mental health is important for a number of reasons. Research studies suggest that children with heart problems are at greater risk for emotional and behavioral problems when their parents report chronic stress and problems in family relationships.2 A recent study also found that chronic stress contributes to health problems among adults.3 While it can be difficult for parents to focus on their own mental health when their child has a heart problem, parent mental health is an important part of child and family wellbeing.

What should I watch for? When should I become concerned?

All parents feel sad and anxious at times, but most are still able to complete the tasks required in daily life. However, it is cause for concern when emotional difficulties get in the way of parenting, working, or handling other aspects of daily living. See Table 1 for symptoms and behaviors that may indicate mental health problems such as anxiety, depression, or traumatic stress.

What can I do if I am having problems?

There are things that parents can do to handle stress. Basic self-care such as eating healthy and regular meals, getting sleep, exercising, and taking time for oneself can help. Talking to other parents who have faced similar challenges can also help. If parents are struggling emotionally while their child is hospitalized, a social worker may be able to connect them with hospital or community resources to reduce stress (for example, support groups, parent-to-parent education, temporary housing near the hospital). It is also important for parents to talk with their child’s hospital care team about ways that the team can best support their family (for example, supporting parents in holding or comforting their child). A psychologist or counselor may be available within the hospital to work with parents on adjusting to medical challenges and coping with stress. However, if emotional difficulties continue and are severe, parents may need professional help outside of the hospital. There are medications and therapies that are effective in treating many mental health problems. Parents should work with their primary care provider to develop a treatment plan.

Why should I get help?

It is important for parents to seek help if needed, as mental health problems can become worse if not treated. Addressing parent mental health problems can help to ensure a positive family environment in which children with heart problems can develop and thrive.

Table 1. Symptoms that may indicate mental health problems.

DiagnosisSymptomsExamples
AnxietyUncontrollable anxiety or worryConstant worry that something is wrong with child’s heart
Avoiding situations that result in anxietyPutting off doctor’s appointments due to fear of bad news
RestlessnessFeeling “keyed up,” on edge
Easily fatiguedFeeling tired all of the time
Problems concentratingCan’t focus, mind goes blank
IrritabilityEasily annoyed
Muscle tensionTense muscles or pain in neck, shoulders
Sleep problemsProblems falling or staying asleep, or restless sleep
Depression
Depressed mood Feeling sad, empty, hopeless most of the time
Loss of interest in activities Not enjoying things that used to be fun, social withdrawal
Change in weight or appetite Significant weight loss when not dieting or weight gain
Sleep problems Can’t fall asleep, frequent night waking, sleep too much
Fatigue/loss of energy Difficulty getting out of bed or completing daily tasks
Feelings of worthlessness, guilt Low self-esteem, feeling to blame for child’s condition
Concentration problems Can’t focus, can’t make decisions
Recurrent thoughts of death Thinking there is no point in living
Traumatic Stress
Exposure to traumatic eventWitnessing child get chest compressions after cardiac arrest
Frequent, upsetting memories of traumatic eventCan’t get thoughts of child in intensive care unit out of mind
Frequent, upsetting dreams of traumatic eventNightmares about child’s hospitalization
Feeling distressed when reminded of traumatic eventFeeling panic during routine appointments at the hospital
Avoiding reminders of traumatic eventTaking a different route to avoid driving past the hospital
Negative thinking or moodFeeling detached from others, frequent negative emotions
Changes in arousal/reactivityIrritable behavior, angry outbursts, sleep problems


References

1. Franich-Ray C, Bright MA, Anderson V, Northam E, Cochrane A, Menahem S, Jordan B. Trauma reactions in mothers
and fathers after their infant’s cardiac surgery. J Pediatr Psychol. 2013;38:494-505.

2. DeMaso DR, Labella M, Taylor GA, Forbes PW, Stopp C, Bellinger DC, Rivkin MJ, Wypij D, Newburger JW. Psychiatric
disorders and function in adolescents with d-transposition of the great arteries. J Pediatr. 2014;165:760-766.

3. Sumner JA, Kubzansky LD, Elkind MSV, Roberts AL, Agnew-Blais J, Chen Q, Cerdá M, Rexrode KM, Rich-Edwards JW,
Spiegelman D, Suglia SF, Rimm EB, Koenen KC. Trauma exposure and posttraumatic stress disorder symptoms predict
onset of cardiovascular events in women. Circulation. 2015;132:251-259.

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