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.

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Principal Investigator: Karen Benzies PhD, RN


Lyndsay MacKay PhD, MSN, RN

Chantelle Barnard MD, FRCPC




Catherine MacNeil MD

Juliana Harris Patient and Family Centred Care Project Manager

In Phase 1 of this project, interviews with parents of MFI and the health care providers (HCP) that care for them allowed us to gain important insights into their experiences. HCP described trusting relationships with parents as the foundation for enhancing collaboration and empowering parents to care for their babies. To build supportive and trusting relationships, HCP use strategies such as optimizing communication, building parents’ confidence by involving them in their baby’s care, and being flexible and tailoring care to meet each family’s unique needs.

When parents spoke about their experience of caring for a baby in the hospital, they described a deep sense of grief and sadness at the loss of parenting a healthy baby at home. This grief was compounded by numerous stressors, including the baby’s fragility, uncertainly about the future, inconsistent and inadequate communication with the care team, and balancing caring for the baby in hospital with work and other family obligations. Supportive relationships with HCP were a key factor in decreasing parents’ distress and helping them cope. Parents especially valued when HCP involved them in their baby’s care, were approachable and responsive, did small things that made a difference, and made them feel like they truly cared.

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