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Hypoplastic left heart syndrome (HLHS) is a complex heart malformation that requires life-saving treatments. Parents experience numerous challenges as they learn to parent a child with complex care requirements. The following research question guided this qualitative study: Is the parenting process among parents of a child with HLHS characterized by exaggerated vigilant parental action, and if so, how does this influence parental response? Situated within a larger program of pediatric cardiology research, this study included data from two grounded theory studies with parents of children with HLHS. This secondary analysis involved a thematic content analysis using sensitizing concepts of uncertainty, protectiveness, support, and mastery of complex care. Transcribed data from 55 interviews with 24 mothers and 17 fathers of young children with HLHS were analyzed for relevant and recurring themes. In mastering skills required to care for their child with HLHS, parents contrasted what was in their hands with what was out of their hands. Vigilant parental actions were evident as parents became skilled at providing complex care. Parents said they were sometimes excessive in their vigilant actions. In retrospect they viewed this vigilance as appropriate in some situations but exaggerated in other situations. Understanding parents' vigilant actions in response to their child's complex care can guide health care providers' interactions with families. Long-term follow up, both clinically and through research, is needed to assess the long-term consequences of exaggerated vigilant parental action on the child, parent, and family, and to determine and evaluate appropriate and timely intervention.

Aim: To report a grounded theory study to describe the process of parenting young children who have survived hypoplastic left heart syndrome to inform parent-focused interventions., Background: Technological advances in paediatric cardiology worldwide have improved the survival rates for young children with hypoplastic left heart syndrome who undergo staged surgical palliation. These children, however, are at risk for life-threatening complications and parents are charged with the responsibility to monitor their children at home with minimal support and guidance from healthcare professionals once home., Design: A constructivist grounded theory study., Method: The study was conducted in 2006-2008. Participants were 25 parents (15 mothers, 10 fathers) and 28 grandparents (17 grandmothers, 11 grandfathers) of 15 young children (6 months-4·5 years) who had undergone the Sano surgical approach for hypoplastic left heart syndrome. The 53 interviews were digitally recorded, transcribed and analysed using open and focused coding, constant comparative analysis and memoing., Findings: A process of Parenting under Pressure emerged that was characterized by four overlapping and re-emerging phases: (1) realizing and adjusting to the inconceivable; (2) growing increasingly attached; (3) watching for and accommodating the unexpected; and (4) encountering new challenges., Conclusions: In-depth understanding of the phases of Parenting under Pressure provides direction for nurses to support parents of children who survive hypoplastic left heart syndrome. Interventions that help carers of children with complex health conditions move through the phases of our Parenting under Pressure process may help them safeguard the survival of their children, and their own survival as parents as they manage multiple demands., (© 2012 Blackwell Publishing Ltd.)

The Family Management Style Framework (FMSF) was used as a conceptual basis for secondary data analysis of 55 previously conducted interviews with mothers and fathers of children with a lethal congenital condition from two surgical treatment eras. The directed content analysis was guided by a coding structure developed from family management dimensions identified in prior research of family response to childhood chronic conditions. Results indicated that application of the FMSF was helpful in differentiating families and their processes of family management at the onset of their infant's illness through to surviving the first surgery and going home. The dimensions of Illness View and Child Identity were central to the parents' capacity to manage their baby's illness demands within their family context. Applying a robust family framework to a complex neonatal condition at illness onset provides compelling direction for clinical interventions and their rigorous evaluation.

PURPOSE. This study described the role normalization played for parents related to their young children with hypoplastic left heart syndrome. DESIGN AND METHODS. The data source for this secondary analysis was 30 interviews with 16 parents. RESULTS. Three themes were identified: normalization, parental perception of child vulnerability, and optimistic appraisal. Parents engaged in a balancing act between worrying about their children's vulnerability and marveling at their children's survival, using normalization as a coping strategy. PRACTICE IMPLICATIONS. Nurses can collaborate with parents to determine strategies to restore a sense of normalcy to simultaneously promote child independence and parent well-being., (© 2011, Wiley Periodicals, Inc.)

This article argues for the concurrent and comparative use of genograms and ecomaps in family caregiving research. A genogram is a graphic portrayal of the composition and structure of one's family and an ecomap is a graphic portrayal of personal and family social relationships. Although development and utilization of genograms and ecomaps is rooted in clinical practice with families, as research tools they provide data that can enhance the researcher's understanding of family member experiences. In qualitative research of the supportive and nonsupportive interactions experienced by male family caregivers, the interactive use of genograms and ecomaps (a) facilitated increased understanding of social networks as a context for caregiving, (b) promoted a relational process between researcher and participant, and (c) uncovered findings such as unrealized potential in the participant's social network that may not be revealed with the use of the genogram or ecomap alone, or the noncomparative use of both.

The authors successfully used the card sort data collection technique with 17 female family caregivers in a large ethnographic study of non-support. 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.

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]