A Metasynthesis: Uncovering What Is Known About the Experiences of Families With Children Who Have Life-limiting and Life-threatening Illnesses

J Pediatr Nurs. Jan-Feb 2018;38:88-98. doi: 10.1016/j.pedn.2017.11.004. Epub 2017 Nov 27.

Abstract

Purpose: To conduct a metasynthesis of qualitative research exploring parents' psychosocial experiences during complex and traumatic life transitions related to caring for a child with a life-limiting (LLI) or life-threatening illness (LTI).

Background: Parents' experiences of caring for a child impacted by an LLI or LTI are not clearly understood, and holistic, comprehensive pediatric nursing care for parents who have children with LLI and LTIs continues to be developed as treatment improves and survival is extended.

Review methods: Predetermined inclusion and exclusion criteria were used to review qualitative studies. Those included were appraised, classified, and synthesized using systematic procedures guided by Sandelowski and Barroso (2006).

Data sources: A systematic search of qualitative research was conducted by an experienced librarian to identify and retrieve studies from 10 databases.

Results: Of the 3515 studies screened, 23 were included. A synthesis of the findings demonstrated that parents experience profound and pervasive uncertainty, leading to their own illness experience being described as a dual reality in which fighting for survival and recognizing the threat of their child's death were daily challenges. Three key processes emerged: the devastation of living with uncertainty, the emergence of hope, and moving forward.

Conclusion: The integration of findings adds to the current body of knowledge by highlighting the very complex experiences that parents undergo. These findings can support a more comprehensive pediatric nursing plan of care that accounts for the intricacies of the parental experience and the importance of hope.

Keywords: Hope; Life-limiting illness; Life-threatening illness; Metasynthesis; Parent experiences.

Publication types

  • Meta-Analysis
  • Review

MeSH terms

  • Adult
  • Caregivers / psychology*
  • Child
  • Child, Preschool
  • Critical Illness / psychology
  • Disabled Children / psychology
  • Disabled Children / statistics & numerical data
  • Family Health
  • Female
  • Humans
  • Male
  • Parent-Child Relations
  • Parents / psychology*
  • Qualitative Research
  • Quality of Life*
  • Stress, Psychological / epidemiology*
  • Terminally Ill / psychology*
  • United States