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The purpose of this study is to describe the process of parenting a child with life-threatening heart disease. Despite advances in pediatric cardiac sciences, hypoplastic left heart syndrome remains difficult and controversial to treat. The Norwood surgical approach is a developing technology, and little is known about how mothers and fathers experience parenting a child who survives this treatment. Constructivist grounded theory informed this Canadian study that involved multiple interactive interviews with 9 mothers and 7 fathers of children with hypoplastic left heart syndrome who were at various stages of treatment. Extraordinary parenting in a context of uncertainty was evident as parents simultaneously safeguarded their child's precarious survival as well as their own survival. As technologically advanced treatment contributes to the survival of children with complex health conditions, health care professionals must consider how to promote and support parenting strategies that benefit the new survivors of technology as well as their families. [ABSTRACT FROM AUTHOR]

The authors successfully used the card sort data collection technique with 17 female family caregivers in a large ethnographic study of nonsupport. In this article, they describe the practical issues they addressed. Initially, they developed strategies to construct meaningful statements that reflected key themes and were manageable in an interview. Later, to address challenges for participants, they developed approaches to assist women in moving beyond their own experience, dealing with test anxiety, and anticipating an emotional response. To facilitate effective data collection, they made detailed arrangements in advance, collected "talk aloud" data that captured women's decisions, and maintained accurate records. The women felt validated in their caregiving roles, as the card statements reflected their experience and rich data was elicited. The card sort exercise contributed information about variability in the meaning of similar interactions for different women and a beginning understanding of the criteria women used to make decisions. [ABSTRACT FROM AUTHOR]