The process to expertise: A constructivist grounded theory study with caregivers of hospitalized infants with critical congenital heart disease

Caregivers of hospitalized infants with critical congenital heart disease (CCHD) experience stress, emotions, and contextual challenges with staff and unit culture during their infant's stay in critical care units, especially if the stay is lengthy. These compounding adverse conditions impact a caregiver's ability to learn to care for their infant. The purpose of this constructivist grounded theory study was to construct an explanatory theory, based on the analysis of the caregivers' perspectives, to uncover the process caregivers of hospitalized infants with CCHD go through to become experts of their infant's care in the critical care setting. Fifteen mothers and one father participated in intensive, semi-structured interviews. Data collection, data analysis, and theory formation transpired through an iterative process of constant comparison within and amongst data cases, theoretical sampling, memos, and participant feedback. The result was a co-constructed overarching framework, the Process Model to Caregiver Expertise, showing how caregiver confidence develops over time and through active participation in caregiving tasks. Findings also indicate that caregivers need prompt peer and mentorship connections and early active participation in caregiving tasks to hasten their transformation into independent, expert caregivers. Knowing this process may empower caregivers to understand their journey and guide education, support, and tool development for healthcare providers. Additional research is needed to understand the paternal caregiver role, healthcare professionals' perceptions of this process, and how the model develops as the child ages.