Parenting the child with hypoplastic left heart syndrome

Sandra Ruth Mott, University of Rhode Island


What is it like to parent a child born with hypoplastic left heart syndrome (HLHS)? Until recently these children did not live beyond infancy so the question was mute. With the advent of new technologies and care these infants are surviving and thriving. However, they require intense care during their first few years of life. A literature search revealed many publications related to the infant's physical care before, during and between surgeries but little that addressed parenting expectations or concerns. To discover what it was like to be the parent of a child, who was living with a reconstructed heart, parents were asked to describe their perceptions of parenting these special children. ^ A descriptive naturalistic study was designed to answer the research questions: (1) What was the process by which parents learned to parent their child with HLHS? (2) How do parents of children living with HLHS perceive themselves as parent and caregiver? and (3) What strategies do these parents use as they combine the activities of parent and caregiver? Three sets of parents participated in in-depth audiotaped interviews lasting approximately two hours each. The parents responded to the question. “What is it like being the parent of a child with HLHST?” Transcribed data were coded within each document and then across documents. The coded data were categorized, collapsed, conceptualized and abstracted. ^ A process consisting of four phases labeled Reconstructing Family Life was identified. The phases were living in a fog, living on the edge, new ways of living, and reclaiming life. Parenting behaviors were modified to limit the intrusiveness of the disease through assessing, modifying, and protecting while living day-to-day with guarded optimism and uncertain hope. This study provides the impetus for research to continue learning from parents if other categories exist in the process of learning to parent these special children. These research findings will contribute to the generation of a midlevel theory of parenting the child with complex cardiac disease. Sharing these findings will support nurses in providing more accurate and appropriate information, anticipatory guidance, and resource support to parents as they experience this process. ^

Subject Area

Health Sciences, Nursing

Recommended Citation

Sandra Ruth Mott, "Parenting the child with hypoplastic left heart syndrome" (2003). Dissertations and Master's Theses (Campus Access). Paper AAI3103713.