Processes of Care for Medically Fragile Infants on an Inpatient Pediatric Unit: A Grounded Theory Study
AuthorMacKay, Lyndsay Jerusha
Committee MemberRaffin Bouchal, Shelley
Subjectmedically fragile infant, parenting, hospitalized infant, parental mental health, health care provider
MetadataShow full item record
AbstractToday, increasing numbers of Medically Fragile Infants (MFI) born with severe, life-threatening illnesses are surviving the neonatal period due to medical and technological advancements in care. Such infants require long-term hospitalization and remain dependent on technology for survival. MFI are defined as preterm or full-term infants who (a) have a life-threatening chronic medical illness that require technology for survival, (b) remain hospitalized for several weeks to months, and (c) are expected to be discharged with a chronic health problem. Parenting MFI is typified by frequent health setbacks and uncertainty, which adds complexity, impediments, and complications to becoming a parent. Also, parents of MFI have higher than average rates of anxiety, depression, chronic stress, and post-traumatic stress disorder. The literature reflects that outcomes for MFI and their parents are poor. The aim of this grounded theory study was to create a deeper understanding of the processes of care provided to MFI from the perspectives of parents and Health Care Professionals (HCP). Specifically, I explored what it was like for parents to provide care to hospitalized MFI, and why some struggled. Also, I explored why caring for MFI was stressful for HCP, and why frustrating encounters often transpired between parents and HCP. I used Charmaz’ approach to grounded theory to gain this understanding. The findings suggest that parents and HCP have different yet interconnected experiences of caring for MFI within the inpatient pediatric unit. Parents experienced grief and multiple stressors, and they utilized internal and external coping mechanism to manage their grief and stressors. When they were unable to cope with grief and stressors, they experienced difficulty in their parental role and mental health difficulties. HCP experienced stress and burnout due to the complexity of MFI and the complex parental experience of today. HCP aimed at developing trust with parents so they could establish a supportive relationship. The relationship was a means to educate and empower parents to care for their hospitalized infant and work collaboratively with parents in the planning and delivery of care. However, HCP encountered multiple frustrating encounters with parents that were barriers to the development of a therapeutic relationship because of the complexity and high demands of MFI’ care needs and parental ability, or lack thereof, to cope with their grief and stressors. The parent and HCP’ experiences were compared and contrasted; areas where concepts and themes overlapped were identified and the grounded theory emerged: “Journeying Along Side One Another”. The space where parental and HCP’ different, yet interconnected, experiences came together was in the liminal space between their experiences, where parents and HCP interacted with one another. When key factors were present beneficial interactions transpired between HCP and parents, and supportive relationships built on trust were established; experiences and interactions became shared and interconnected, and parents and HCP journeyed together. When the key factors were absent, parents and HCP did not engage in mutually beneficial interactions, and supportive relationships built on trust were not established; difficult interactions transpired between parents and HCP, and they did not journey together. Parental and HCP’ characteristics impacted beneficial interactions in conjunction with key factors.
CitationMacKay, L. J. (2019). Processes of Care for Medically Fragile Infants on an Inpatient Pediatric Unit: A Grounded Theory Study (Unpublished doctoral thesis). University of Calgary, Calgary, AB.
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