The lived experiences of fathers who have children with Duchenne Muscular Dystrophy: A Mixed Methods Study.

Abstract

This thesis focuses on understanding the lived experience of fathers who have children with Duchenne Muscular Dystrophy (DMD) through the lens of the nurse researcher, using a mixed methods approach.

Component one is a phenomenologically informed study using in-depth interviews from two fathers, with the data considered as narratives. Additional fathers initially agreed to participate however interview arrangements could not be confirmed. The second part assessed father’s attendance at their child’s specialist multidisciplinary clinic appointments from 2016-2017 using a quantitative medical records review.

The narrative data is presented based on the father’s lived experiences around key time points in the trajectory of DMD and issues they raised. These included the father’s upbringing and family values, time before diagnosis, time of diagnosis, disclosure of DMD to their son, thinking of their son’s future, managing day-to-day, transition in mobility, and supports. Both fathers had a strong desire and drive to nurture their sons with DMD, generating positive experiences and optimising quality of life, often linked to their ability to provide appropriate housing and transport. Fathers discussed the impact of DMD on the whole family, in particular siblings, and the importance of their personal and family values in their approach to the care of their child. The fathers reported relying mostly on informal networks of support.

Component two assessed a range of variables at the child and family level in medical records to see if they were associated with father’s attendance at clinic appointments. The records of 41 children attending the Sydney Children’s Hospital multidisciplinary neuromuscular clinic during 2016 and 2017 were examined. Father’s attended 107 of the 188 appointments (57%). There were no significant associations between attendance by fathers and child’s ambulation status, whether English was a first language at home, location of residence or child’s age.

In conclusion, the current study has provided some insight into the lived experiences and engagement of fathers of children with DMD in the care of their child. Clinic attendance by fathers is often not optimal and other mechanisms to engage fathers need to be explored.