In the early hours of the morning in the Cardiac Intensive Care Unit, CICU, a mother worries about her sleeping child’s raspy, irregular breathing. She looks at the machine he’s hooked up to – a machine that monitors his heartbeat – to make sure he’s doing okay. It doesn’t allay her fears and she counts the hours till a nurse comes in and provides her with an update about her child’s progress. He’s stable, she’s relieved but only momentarily. That’s because her son may never have a carefree chi"Chronic diseases like CHD require life-long care. But many families whose children are undergoing treatment are unable to attend post-surgery appointments due to financial constraints or the challenge of travelling long distances."
Dr Laila Ladak
ldhood since he would require constant follow-ups throughout his life.
“That is the reality of children with congenital heart disease, CHD,” says Dr Laila Ladak, an alumna of Aga Khan University’s School of Nursing and Midwifery as she speaks about her doctoral research on the quality of life of CHD patients after surgery.
CHD refers to birth defects in the structure of the heart that can affect a child’s quality of life, making them vulnerable to various physical, emotional, psychological and physiological problems as they grow.
“Chronic diseases like CHD require life-long care,” Dr Ladak adds. “But many families whose children are undergoing treatment are unable to attend post-surgery appointments due to financial constraints or the challenge of travelling long distances.”
Dr Ladak picked up these insights while working as an intensive care nurse, an experience which led to her pursuing further nursing education, a PhD on the experience of patients and their families’ post-surgery.
More recently, Dr Ladak has been invited to join a global expert group spearheaded by the International Consortium for Health Outcomes Measurement in Washington, DC. The group is developing a set of standards for CHD following a value-based healthcare model that involves CHD patients and their parents in the overall process. Dr Ladak is the first and only nurse expert on this group from low and middle-income countries.
“I am excited to join a committee whose vision aligns with something I truly believe in -- the integration of patient-reported outcomes, PROs, in healthcare planning,” she says. She describes PROs as health-related data that is generated and reported by the patient, their family members or caregivers themselves.
She feels this is an excellent opportunity for her to work towards democratising healthcare for patients and making them key stakeholders in decision making.
“There is huge gap in health care delivery between tertiary care hospitals and rural communities. You can’t get treatment for CHD outside of major cities and those living in rural areas won’t seek treatment unless they are engaged and feel in control of their child’s treatment.”
Dr Ladak has recently returned to her alma mater after completing her PhD in Nursing from the University of Sydney, Australia. She has been jointly appointed as assistant professor, research by the School of Nursing and Midwifery and the Department of Paediatrics and Child Health.