Paper Presentation: Outcomes of Serious Illness on Nurses, Patients, and Families—Keeping a Positive Outlook – Strategies, Threats, and Outcomes for Parents of Children with Cancer and Other Serious Illness (225-1)

12:15 – 12:35 pm Friday, September 4

Parents who make end-of-life decisions for their seriously ill children do so according to their individual definitions of ‘being a good parent’ to their seriously ill child. This pediatric cancer nursing concept, developed by Pamela Hinds, has been applied to parents of critically ill children but has potential relevance for other pediatric contexts.

We will describe analytic steps and example outcomes of a synthesis of grounded theories (GTs) to further develop the good parent themes and present our expanded conceptualization of the theme Keeping a Positive Outlook (KPO). These analyses will inform formal GT development of being a good parent to my seriously ill child for Dr. Hinds' R01 (1R01NR015831-01). We synthesized 25 GTs of parenting children with cancer and other serious conditions. Using metasynthesis, we identified findings from GTs supporting good parent themes. We developed novel data extraction/summary, matrix analyses, and theorizing we named thematic expansion to position theme results in a theoretical description including contextual influences, parenting behaviors, and outcomes. 52% of the GTs provided evidence to support salience of the KPO theme. Among GTs conducted in 4 countries, samples included 126 mothers and 68 fathers in 220 families of children with 5 different illness conditions, with cancer being the most frequently studied. KPO entailed purposeful cognitive parenting behaviors (e.g., focusing on the present, living one day at a time) that enabled caregiving and decision making. Influencing factors included parents’ assessment of the child’s health status, caregiving demands, and social support. Across studies parents identified multiple outcomes of KPO for themselves, the ill child, and their family. KPO buffered against being overwhelmed by the condition, sustained hope, and diminished uncertainty. The qualitative metasynthesis techniques, including our newly developed thematic expansion offers the ability to extend greater application of qualitative research findings into pediatric oncology and pediatric nursing practice.

Katherine Kelly, PhD APRN PCNS-BC CPON®
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