Research indicates that continued parental involvement in T1D management is paramount during the transition to adulthood, yet there is a paucity of information about the needs of mothers during this time. To ensure family-centered care throughout the lifespan, this research seeks to gain a better understanding of the influence of T1D on the mother’s quality of life during their adolescent’s transition to adulthood. Participants were recruited from the Parents of Diabetics Facebook page, JDRF, and the Children with Diabetes newsletter. Twelve mothers of adolescents with T1D (average age of adolescent=19.42, SD=1.44, average age at T1D diagnosis=11.14, SD=3.3 years) were interviewed. Interviews were audio and video recorded, transcribed verbatim, and analyzed by two independent researchers using the Family Management Style Framework. Mothers reported continued feelings of anxiousness and uncertainty related to lack of control of their adolescent’s T1D management. Involvement in T1D management ranged from a “hands-off” approach to high levels of involvement, including daily blood glucose monitoring and communication regarding T1D. Management of T1D had a profound influence on mothers' ability to work outside the home, with many mothers reporting that they chose not to work to care for their children full time. Mothers also reported receiving limited support from family and friends as well as strained relationships related to lack of understanding about T1D and its management. Isolation, anxiety, and continued worry about T1D and its ever-present impact on their children led to diminished quality of life for mothers during the adolescents’ transition to adulthood. The needs of mothers of adolescents transitioning to adulthood with T1D are largely ignored. This study highlights the long-term consequences of T1D on mothers as well as the need for continued professional support for mothers during the adolescent's transition to adulthood and beyond.
M. Ness: None. J. Saylor: None.
Towson University (FDRC funding)
