The Lived Experience of Jordanian Parents of Children with Cystic Fibrosis: Qualitative Study

Cystic fibrosis (CF) is a common autosomal recessive disease with an incidence of 1:2560 live births in Jordan. It affects the quality of life for both the child and the parents. In Jordan knowledge about parents' experience with children diagnosed with CF is limited. The purpose of this study was to describe and explore the lived experience of parents of children with CF, and the difficulties and challenges they face. A qualitative phenomenological method was used. Twenty-five parents of children with CF were interviewed. The Scribber thematic analysis was used in data analysis. Four themes emerged. First, “Falling into the circle of suffering”, Second, “The circle of suffering”, with two sub-themes: the challenges, and the limitations in daily life. Third, “Coping within the circle of suffering”, with four sub-themes: focus on problems, focus on emotions, social and economic factors, and spirituality. Fourth, “Future outlook”, with two sub-themes: optimism about the future, and pessimism about the future. Parents of children with CF suffer from difficulties and challenges that limit their daily lives. Education is needed for health care providers, society and parents about CF; and parents need support to improve their quality of life. •Cystic fibrosis affects all aspects of family life; such as the social, the economic, health, personal, and spiritual.•Healthcare providers, especially pediatric nurses, should educate parents regarding the appropriate treatment.•Pediatric nurses need to help parents to alleviate anxiety, frustration, and the feeling of blame and shame.•The lived experience of parents was real suffering.