Many people born with heart abnormalities display resilience and a great quality of life; nonetheless, they may endure a variety of health-related psychological and social issues throughout their lifetimes.
A new scientific statement examines the psychological and social obstacles that persons born with heart abnormalities face from infancy through maturity, as well as the sorts of mental health therapy that may be useful. The declaration argues for the integration of mental health specialists into interdisciplinary teams that offer medical treatment to children and adults with congenital heart abnormalities, which is more widespread in cancer care than cardiac care.
Congenital heart defects (CHD) occur when a person is born with structural heart or blood vascular abnormalities.
To resolve these difficulties, surgery and catheter procedures are frequently necessary. The majority of CHD patients survive into adulthood, with adults currently outnumbering children among the more than 2.4 million CHD patients in the United States. A surgical operation, on the other hand, does not cure CHD. People may require many procedures and specialty heart care throughout their lifetimes, particularly if they were born with complicated cardiac abnormalities.
“Decades of research describes the psychological and social stressors and challenges that can present across the lifespan for people with CHD,” said Adrienne H. Kovacs, Ph.D., chair of the writing committee for the scientific statement and a clinical psychologist who specializes in working with people who have CHD. “It’s long overdue that we move beyond awareness to action and providing more resources and expert mental health care for people living with CHD.”
A scientific statement issued by the American Heart Association is an expert overview of current research that may impact future guidelines. A companion scientific statement issued by the Association in 2011 addressed cognitive delays and other neurodevelopmental consequences in children with CHD. This is the first declaration, however, to outline the psychological and social problems from infancy to maturity, as well as to assess age-appropriate mental health therapies to promote quality of life.
The American Heart Association’s scientific statement provides an expert evaluation of current research that may influence future guidelines. The Association produced a complementary scientific statement in 2011 that addressed cognitive deficits and other neurodevelopmental implications in children with CHD.
However, this is the first proclamation to identify psychological and social difficulties from infancy to adulthood, as well as to evaluate age-appropriate mental health interventions to improve quality of life.
The statement summarizes the psychosocial impact of CHD during various stages of life:
Infancy: Infants may be subjected to frightening or unpleasant treatments, and they may be away from caretakers and family for lengthy periods of time for surgery or other hospitalisation. As a result, newborns with CHD may be hypersensitive to light and sound, have difficulties eating and sleeping, or exhibit severe anxiety and distress, as well as developmental abnormalities.
Childhood: Additional hospitalizations and operations may occur, resulting in less opportunities to play or attend school, as well as developmental delays. As a result, children with CHD may become socially distant, exhibit anxiety or depression symptoms, struggle in school, or exhibit violence or hyperactivity.
Adolescence — As teens transition from paediatric to adult care, they may experience health difficulties while striving for independence, extending their social networks, and taking on greater responsibility for managing their health care. Adolescents with CHD may experience social difficulties, become angry, rebellious, or frustrated, or have body image issues in response. They may also engage in harmful habits or fail to adhere to health guidelines.
Adulthood — During adulthood, there may be new or worsening heart symptoms, recurrent surgeries or other cardiac treatments, and CHD can have an impact on income, job, insurance, and family planning possibilities. Adults with CHD may struggle with interpersonal connections, further education, or work as a result. They may also have difficulty taking care of their own health and grow concerned about death and dying.
“It’s completely understandable to have a psychological reaction to living with a congenital heart defect. The condition presents numerous challenges throughout the lifespan and may include unexpected news — such as a person realizing they can no longer physically manage the demands of their job, or learning that there are significant risks to pregnancy,” said Kovacs. “Many people with CHD have tremendous resilience in the face of these challenges. At the same time, we want to normalize psychological reactions and increase the prevalence of care for psychological well-being to help people with CHD experience a full and healthy life.”
Approaches to mental health care, according to the statement, may include self-care strategies such as relaxation techniques and hospital-based or online support groups; psychotherapy such as talk therapies for individuals, couples, families, or groups; and medication therapy in which a medical team can determine appropriate, heart-safe medications for depression or anxiety.
The declaration strongly supports the inclusion of mental health practitioners in CHD specialised care teams. Integrated mental health care normalises emotional reactions to health issues, minimises stigma, promotes prompt access when health problems develop, and provides integrated care across the multidisciplinary health care team.
“The goal of this statement is to foster psychologically informed care that empowers people with CHD and their families and provides emotional support,” said Kovacs. “We would like mental health assessment and support to be part of comprehensive care for all people with CHD rather than a special service that is offered only in some places or special circumstances.”