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Patient and family-centered concerns in pediatric cardiac surgery: a Middle Eastern perspective
Neerod Kumar Jha1, Abbas Abdul Hassan2, Mohamed Elmahi3
1Division of Pediatric Cardiac Surgery, Sheikh Khalifa Medical City, PO BOX 51900, Abu Dhabi, UAE. nk_jha@hotmail.com.
Insights
Managing congenital heart disease (CHD) requires addressing patient and family stress, communication, and socioeconomic factors. A culturally sensitive, interprofessional approach improves outcomes and patient experience in pediatric cardiac care.
Area of Science:
- Pediatric Cardiology
- Healthcare Management
- Patient Experience
Background:
- Congenital heart disease (CHD) affects 1% of births globally, contributing significantly to neonatal morbidity and mortality.
- Half of CHD cases require interventions, involving complex clinical, psychological, and social patient care.
- Families and patients undergoing management for complex cardiac conditions face significant stress.
Purpose of the Study:
- To highlight patient and family concerns during the management of complex pediatric cardiac conditions.
- To provide insights for medical personnel, health authorities, and institutions to improve patient care.
- To foster a better patient experience and outcomes in pediatric cardiac surgery.
Main Methods:
- Narrative review of literature from 2013-2026 using Google, Google Scholar, and PubMed.
- Inclusion of daily observations and regional perspectives.
- Analysis focused on parental/patient stress, communication, healthcare coverage, cultural influences, family dynamics, and socioeconomic factors.
Main Results:
- Pediatric cardiac surgery patient concerns encompass clinical, psychological, socioeconomic, and regional factors.
- Communication, stress, educational/employment disruptions, funding, and logistics significantly impact patient experience.
- Effective interprofessional care, psychosocial support, financial aid, and technology use enhance patient experience, especially in diverse regions like the Middle East.
Conclusions:
- Pediatric cardiac care necessitates a multidimensional, culturally sensitive model.
- This model should integrate interprofessional care, empathy, innovation, community support, and system-level solutions.
- Healthcare communication, access, support, and cultural/spiritual identity are crucial for positive patient and family experiences.
Background:
Congenital heart disease affects approximately 1% of live births worldwide and remains among the most significant contributors to neonatal morbidity and mortality. Approximately half of them require surgical or percutaneous interventions at some stage. Patient care involves critical situations including clinical, psychological, social, regional, and cultural practices. Family and patients go through stressful experiences. Through this review, we aim to highlight issues faced by the patients or their families during management of complex cardiac conditions and hope that medical personnel, health authorities and institutions will benefit from the information provided. This will result in a better patient experience and outcomes.
Method:
To identify patient and family concerns, this narrative review is based on daily observations and literature reviews (Google, Google Scholar, PubMed) between 2013 and 2026, and regional perspectives. Key areas included parental and patient stress, communication breakdowns, health care coverage, regional cultural influence, family dynamics, and socio-economic considerations.
Results:
Patient-centered concerns in pediatric cardiac surgery include clinical, psychological, socioeconomic, and regional factors. In addition, communication, stress, interruptions in education or employment, funding, and logistics also influence patient's experience. Effective interprofessional care, psychosocial counseling, finding ways to support the cost of treatment, and appropriate use of technology can foster a better patient experience. This is particularly imperative in the Middle East region, where family cohesion, religious beliefs, language diversity, and healthcare inequities shape the recovery path.
Conclusions:
Our review shows that pediatric cardiac care requires a multidimensional, culturally attuned model that incorporates interprofessional care, empathy, innovation, community support, and system-level solutions involving various professional agencies in health insurance, finance, hospital management, research, and medical education. In addition, healthcare communication, access, support, cultural and spiritual identity plays a significant role in shaping patient and family experience during medical management.
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