Processes of Care for Medically Fragile Infants

Processes of Care for Medically Fragile Infants on In-Patient Pediatric Units: A Grounded Theory Study

Alberta has the second highest rate of preterm birth among Canadian provinces. Babies born preterm make up a large proportion of Medically Fragile Infants (MFI). MFI are babies with chronic/complex conditions and depend on medical technology, long-term hospitalization, and special coordinated care to maintain life.

Providing care for MFI creates many challenges for parents and paediatric health care providers. Family centered care has been implemented widely, but parents still worry about inconsistent advice and lack of involvement in decisions about the care of their infant. A model of care called Family Integrated Care (FICare™) has been shown to improve health outcomes for preterm babies and their families in neonatal intensive care units by integrating parents in the care of their baby in the hospital. However, we don’t know if FICare™ will work for families of MFI who need to be in the hospital for a long time.

The goal of this study was to understand the types of care and outcomes that are important to families of MFI and health care providers. Parents and health care providers caring for MFI participated in interviews. We put together the ideas from both groups and compared them to FICare™ to see if it would work as a model of care, or if it needs to be adapted to better fit the needs of MFI and their families.

 

Study Status: Phase 1 complete; manuscript in progress. Phase 2 in planning stages.

FICare Logo

Principal Investigator: Karen Benzies PhD, RN

Co-Investigators:

Lyndsay MacKay PhD, MSN, RN

Chantelle Barnard MD, FRCPC

Vibhuti Shah MBBS, DCH, MD, MRCP (UK), RCPCH, FRCPC, MSc

 

Collaborators:

Catherine MacNeil MD

Juliana Harris Patient and Family Centred Care Project Manager

Manuscript in progress. Results will be shared soon.

Sponsors and Partners

The Benzies Lab would like to acknowledge funding from the Alberta Children's Hospital Research Institute (ACHRI) and support from our valued partners;

  • Alberta Health Services (AHS)
  • University of Calgary
  • University of Toronto