THE LIVED EXPERIENCES OF PARENTS WITH CHRONIC SORROW WHO ARE CARING FOR CHILDREN WITH A CHRONIC MEDICAL CONDITION

Abstract

Caring for the millions of children living with a chronic medical condition creates multiple parental burdens. Parents whose children have a diagnosis of a chronic medical condition may experience an ongoing, unresolved grief or sadness phenomenon known as chronic sorrow. This may impact parental ability to manage their child’s health care needs and may lead to negative health outcomes for the parent caregiver, affected child, and the family. The aim of this interpretive phenomenological study was to understand the nature and meaning of the lived experiences of parents with chronic sorrow who are caring for a child with a chronic medical condition. A cohort of parent participants whose children have various chronic medical diagnoses was included to determine similarities as well as unique and diverse experiences of chronic sorrow. Data were collected through semi-structured interviews and analyzed for common themes. Demographic data, field notes and a reflexivity journal were important components of data analysis. Demographic data was analyzed using SPSS version 19 software. Six themes captured the nature and meaning of chronic sorrow for twelve participants and overarching truth of life goes on represented the six themes. Implications included early recognition of persons at risk and those who have chronic sorrow, development and testing of assessment tools, inclusion of fathers and children in future research, and inclusion of chronic sorrow content in curricula across the disciplines of healthcare

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