The Lived Experiences of Parents of Children Diagnosed With Congenital Heart Disease: Challenges, Emotional Responses, and Sources of Strength.
Abedallah Kasem, Nadin M Abdel Razeq, Jumana Al-Omari
PMID 42655980WHAT IT FOUND
Parents of children with congenital heart disease described constant vigilance, medication and feeding struggles, financial hardship, stigma and fear.
They also described family support and faith. Nurses should ask about these burdens and provide clear communication, practical guidance and psychosocial support.
Key findings
01Parents lived in continuous alertness, waiting for delayed or uncertain cardiac treatment and monitoring for deterioration.
02Practical care problems included giving medication, travelling to hospital, poor communication, financial sacrifice, and feeding or weight-gain difficulty.
03Parents described fear, stigma and emotional shock, but also family support and faith as sources of strength.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Only ten parents were interviewed, and they came from two public hospitals in Jordan, so the themes may not transfer to other settings. Only one parent per child was included, so the other parent's experience was not captured. Fewer fathers participated because of logistical challenges, so the sample may overrepresent mothers. The severity of each child's heart condition was not described, so emotional responses cannot be linked to medical complexity. Data were collected in 2022, and care delivery may have changed since then. This was a qualitative description of experiences; it did not test whether any nursing or family-centred intervention improves outcomes.
Declared interests
The study was funded by the Deanship of Research at Jordan University of Science and Technology. The authors declared no conflicts of interest.
The easy way to misread this
Do not read the nursing recommendations as evidence that nurse-led support reduces caregiver burden. This qualitative study described ten parents' experiences and did not test any intervention.