"All in One: Fear, Happiness, Faith" A Qualitative Study on Experiences and Needs of Turkish Mothers of Infants with Congenital Heart Disease.

Abstract

Having an infant with congenital heart disease (CHD) may cause difficulties and changes in mothers' life. This study was aim to explore the experiences and needs of Turkish mothers of infants with CHD. The study was carried out with the descriptive phenomenological method from qualitative research. The study sample included 18 mothers having infants in the age range of 0 to 2 years with CHD. The data were collected using a sociodemographic data form and a semi-structured interview form. The data obtained from the interviews were evaluated using the content and thematic analysis methods. Four main themes and sub-themes emerged from the qualitative data. "Effect of getting a diagnosis" with two sub-themes (emotional changes and a protective mother-infant relationship), "All emotions in one" with two sub-themes (fearing of death and torn between fear and hope), "Influences on a mother's life" with three sub-themes (forgetting herself, getting away from siblings' lives and relations with spouse), and stressors with three sub-themes (loss of control, physical care and unfulfilled needs). The results of the study provide insight into how Turkish mothers subjectively experience life after CHD. Mothers expected healthcare professionals to support and understand their experiences and needs. Healthcare professionals need to create an environment for mothers to cope with emotional difficulties, gain knowledge and care skills, and adapt to their lives.