For those of us with Congenital Heart Disease (CHD) medical experiences are a constant part of life. We may have mixed feelings about medical encounters because despite often being associated with feeling unwell and trauma, they also offer us hope and treatment. Our healthcare journey is lifelong; as such, every medical encounter matters.
CHD is the most common birth defect, accounting for a third of all congenital conditions. Survival into adulthood for these babies has improved by 75% since the 1940s, leading to a growing, hidden population who often struggle to access the lifelong, specialist cardiac care that is recommended.
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The CHD population includes people with a variety of incurable heart defects, which vary in severity and prognosis, and can impact every area of life from childhood. Grounding medical care in the most recent psychologically informed, holistic understanding is essential to this end.
Compassionate communication from clinicians, within the context of a boundaried professional relationship, can help to facilitate trust, mutual respect and alleviate distress. Providing accessible information; avoiding the use of medical jargon; checking to ensure that we have understood; taking seriously any concerns; promoting dignity; and making time to answer any questions are essential components of facilitating healthcare literacy and self-management of chronic health conditions.
To feel as psychologically safe as possible, we need to be able to trust that healthcare providers understand the limits of their competencies and will reach out to specialist colleagues as required. It is vital that our lived experience is acknowledged and validated, with any concerns being taken seriously.
Medical interventions can be painful and frightening. Informing and engaging us in making choices about these procedures, including ensuring adequate pain management, asking what matters to us, and facilitating coping techniques can help. Social support is one of the most protective factors for mental well-being, especially during times of poor health, so facilitating the presence of loved ones can provide comfort.
It can be difficult to distinguish between benign cardiac arrhythmias and more serious issues, especially if similar feelings in the past have indicated a serious problem, which can lead to anxiety. Understanding this and taking the time to validate and explore our concerns will help us manage our condition. Consistency of care from familiar medical staff is also important to help us build a trusting relationship with our care team and having a named point of contact, such as a specialist nurse, can help.
All these little things matter. Improving psychological outcomes will ultimately improve medical ones.
Dr Liza Morton, Counselling Psychologist and co-author of Healing Hearts & Minds: A Holistic Approach to Coping Well With Congenital Heart Disease (OUP)