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
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.
Diagnosis | Symptoms | Examples |
Anxiety | Uncontrollable anxiety or worry | Constant worry that something is wrong with child’s heart |
Avoiding situations that result in anxiety | Putting off doctor’s appointments due to fear of bad news | |
Restlessness | Feeling “keyed up,” on edge | |
Easily fatigued | Feeling tired all of the time | |
Problems concentrating | Can’t focus, mind goes blank | |
Irritability | Easily annoyed | |
Muscle tension | Tense muscles or pain in neck, shoulders | |
Sleep problems | Problems 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 event | Witnessing child get chest compressions after cardiac arrest | |
Frequent, upsetting memories of traumatic event | Can’t get thoughts of child in intensive care unit out of mind | |
Frequent, upsetting dreams of traumatic event | Nightmares about child’s hospitalization | |
Feeling distressed when reminded of traumatic event | Feeling panic during routine appointments at the hospital | |
Avoiding reminders of traumatic event | Taking a different route to avoid driving past the hospital | |
Negative thinking or mood | Feeling detached from others, frequent negative emotions | |
Changes in arousal/reactivity | Irritable 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.