Parent Education/Discharge Instructions

View the full PEDI training modules and download resource documents.

In the U.S. and other parts of the developed world, many hospitals encourage parents of a critically ill child to maintain close contact with their child and to be intimately involved with the care process, especially during the critical days just after their child leaves the hospital. In the hospital, parents are often welcomed into pediatric Intensive Care Units (ICU), provided they follow the required procedures. Research and experience support this level of parental involvement, pointing to increased family satisfaction with patient care.

However, Children’s HeartLink’s experience is that in many developing countries, parents do not have the opportunity to be as involved. Cultural norms, clinical practices, heavy workloads and the educational level of the parents often present challenges.

While accompanying Children’s HeartLink on a training visit to Chengdu, China, in February 2009, Rick and Gretchen Jelinek and Steve and Kathi Austin Mahle were struck by the difference. Parents were not allowed to enter the ICU where their children were recovering, and being parents themselves, they could imagine what the Chinese parents must have been going through, not being able to see or touch their children after surgery – sometimes for days.

Meanwhile, Sandy Staveski, R.N., P.N.P., a dedicated Children’s HeartLink volunteer nurse educator and nurse practitioner from Lucile Packard Children’s Hospital at Stanford and Pam Sagan, a former cardiac intensive care nurse, were also amazed by the opportunity they saw to involve parents more in their children’s care. “Parents are parents no matter where in the world they live. They all want the best possible care for their children. They travel incredible distances, come with extended family members, wait for days sometimes for consideration, and the gratitude regis­tered in their faces after the surgery is palpable,” said Sagan.

Working with a diverse group of stakeholders, including volunteer nurses and physicians from Lucile Packard Children’s Hospital at Stanford, University of Minnesota Masonic Children’s Hospital, Birmingham (U.K.) Children’s Hospital and Minneapolis Community and Technical College, volunteer graphic designers, parents of children with heart disease and partner site representatives, Children’s HeartLink launched the Parent Education/Discharge Instructions (PEDI) project.

The objective of the PEDI project is to help parents and caregivers provide better care to children who have undergone heart operations by providing them with discharge instructions on medication, wound care, physical activity, diet, etc. Use of the discharge instructions should lead to better follow-up with patients and improved quality of care provided by hospitals. Studies indicate that delivery of postoperative patient education through individualized content, use of combined media for delivery, provision of education on a one-on-one basis, and in multiple sessions are associated with improvement in educational/health outcomes.[1]

With the help of the project team Children’s HeartLink developed a package of materials that can be used by hospitals when implementing PEDI. The package includes two booklets for literate families: one on preparing for a hospital stay, and a second with guidance on post-hospital care at home; a low-literacy audience instructions document with illustrations and some text; posters with the same instructions to be used in the patient wards; and an electronic nursing training tool on how to present the information to caregivers.

In June 2010, the PEDI Project had a successful debut at Children’s HeartLink’s partner site at Innova Children’s Heart Hospital in Hyderabad, India. Nurse volunteers worked directly with parents and also trained and supported Innova nurses to prepare them to teach families. Building on that successful experience, in June 2011, Children’s HeartLink continued with the second phase of the PEDI pilot, the development of low-literacy parent and caregiver training tool and the electronic nursing training module. Both times, the PEDI team worked closely with the local staff to provide training on using the materials and collected feedback for further enhancement. The results suggested that there has been an impact on the quality of the teaching and the interactions with families, and the PEDI team is planning on publishing the data. In addition, results from the electronic nursing teaching module show significant improvements in the knowledge of nurses who took it. Today, Innova has successfully integrated PEDI in their discharge process and nursing staff have been doing teaching with parents and caregivers both pre-operatively and pre-hospital discharge. 

As of mid-2014, PEDI has been implemented in nine Children's HeartLink partner hospitals in five countries (India, China, Malaysia, Vietnam and Brazil). At least 540 health care professionals have received PEDI training and have in turn educated nearly 10,000 patients and their families using the PEDI materials. The PEDI training module is available in five languages, and the PEDI booklets are available in 12 languages. There have been hundreds of visits to the PEDI webpage. A PEDI Project poster was presented at the Institute for Patient and Family Centered Care Summit in Vancouver, Canada in 2014. Next steps for PEDI include the introduction of the materials by a team of trained medical volunteers to the remaining Children's HeartLink partner sites for training on how to use the discharge instructions and how to tailor the materials to their own needs. 

[1] Fredericks, S., Guruge, S., Sidani, S., Wan, T. (2010). Postoperative Patient Education: A Systematic Review. Clinical Nursing Research, 19, 144-164. doi:10.1177/1054773810365994



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