UCLA

Caring for infants after first stage palliative surgery for single ventricle heart defect (SVHD) can result in challenges beyond the usual parenting responsibilities secondary to medicalized care at home, demanding care routines, the potential for social and financial constraints, and impact on family relationships. Current descriptive studies provide valuable information about factors contributing to caregivers’ adaptation and coping with these medically fragile infants. However, these studies fail to capture the nuances of caregivers’ experiences during the most critical “interstage” period (time between the first and second surgical procedures). Therefore, in this dissertation, I explored and analyzed the impact on the caregivers and family’s daily lives, among mothers and fathers, after two to four months of caring for their interstage infants at home. Grounded theory, influenced by Constructivism, guided the dissertation methodology. In-depth interviews amongst English and Spanish-speaking mothers or fathers were conducted using a semi-structured interview guide. The data analysis led to the development of two grounded theories about the interstage caregivers: 1) A Continuous Process of Compromise During the Interstage Period Amid COVID 19 Pandemic and 2) Developing a Sense of Self-Reliance as an Interstage Caregiver. The first theory reflects the caregivers’ process of adapting to their infants' care during the interstage period, and it consists of two categories: 1) Accepting and adapting to a restrictive home environment, and 2) Reconciling what is and what is yet to come. These categories occurred simultaneously but also fed into each other in a continuous cycle. The second theory describes the context and action of the caregivers throughout the trajectory towards the development of a sense of self-reliance. It consists of three categories: 1) Owning caregiving responsibilities despite grave fears, 2) Figuring out how “to make it work” in the interstage period, and 3) Gaining a sense of self-reliance. Together, these categories bring insight into caregiving processes experienced by our sample participants. Our findings illuminated the extensive disruptions in everyday life experienced by the caregivers. The findings deepen our understanding of the experiences of caregivers who have to live under imposed restrictions and reduced access to their support systems. It highlights the need for healthcare providers to be cognizant of stressors and challenges that caregivers in our sample faced and to provide necessary supportive interventions. This study responds to a gap recently identified by the American Heart Association to address the needs of the family of interstage caregivers through qualitative research.