Maternal Experience of Family-Centered Care and Parenting Their Child with Down syndrome and Congenital Heart Defect

Abstract

Approximately half of children with Down syndrome are born with a congenital heart defect (CHD). There is limited empirical research exploring parental perspective or experience of children with both Down syndrome and CHD in a healthcare setting. The present study aimed to understand how family-centered care (FCC) is experienced by mothers of children with both Down syndrome and CHD in a healthcare setting. FCC is the partnership between the family and medical professionals in making healthcare decisions for a child. Using the FCC theoretical framework, this qualitative descriptive study examined mothers' experiences with the most recent hospitalization of their child with both Down syndrome and CHD, as well as their parenting role. Using an in-depth semi-structured questionnaire tool, nine mothers were interviewed, and data saturation was achieved. Interview questions explored whether the four elements of FCC, i.e. dignity and respect, information sharing, participation, and collaboration were incorporated into their child's plan of care. Data analysis resulted in five themes: communication and support within the hospital, hospital experience and FCC, impact on self and family, personal coping, and parenting a child with a chronic condition. Also, mothers reflected that they were more ambivalent about disclosing Down Syndrome to their child, compared with disclosing the CHD diagnosis. All mothers expressed that they would have overall less concerns if their child had just one or the other condition. Communication challenges were noted as the most reported concern for their child with Down syndrome. The results of this study emphasize the importance of acknowledging unique child and family strengths and needs when working with children living with both Down syndrome and CHD. Implications for practice include an increased intentional focus for developmentally appropriate child life interventions for children with both Down syndrome and CHD, and improving communication between the medical team and children who have communication challenges. Future research should examine fathers' perspectives of parenting a child with both Down syndrome and CHD and examine effective processes for parents to disclose Down syndrome and CHD to the child.