Parental expectations of support from healthcare providers during pediatric life-threatening illness: A secondary, qualitative analysis

Purposes: To explain parental expectations of support from healthcare providers for their parenting roles and goals during a child's life-threatening illness (LTI). Design and Methods: Qualitative interpretive study guided by the Family Adjustment and Adaptation Response Model. Thematic analyses were conducted with data from 31 semi-structured interviews of parents of children with LTI using systematic strategies to ensure rigor including audit trails and prolonged engagement. Results: We identified three themes and one meta-theme or overall theme: (1) "Help us survive this," (2) "Let's fight together: please fight with me, not against me, to care for my family," and (3) "Guide me through the darkness: I am suffering." Overall, the parents conveyed that they expect mutuality with the health care providers and system in order to keep Fighting together for my family survival. Conclusions: In the daily work of caring for their families, parents of children with LTI consider survival on multiple levels. They consider the life, illness, and potential death of one child while considering the on-going survival and sustenance of family relationships. (C) 2017 Elsevier Inc. All rights reserved.