Navigating the quality-of-life impacts of a chronic inflammatory disease (CID) among South Asian children and parents.

This study investigates quality-of-life impacts (QOL) associated with managing a chronic inflammatory disease (CID) among first and second generation South Asian children and parents in the Greater Toronto Area, Ontario. While empirical evidence on both the rise of CIDs among immigrants and the QOL impacts of managing a CID is increasing, little attention has been given to the QOL impacts of managing a CID among immigrant adult children and their families. Drawing on analysis of 24 in-depth interviews with adult children and parents (14 adult children, 10 parents) the results indicate that first and second generation South Asian adult children and parents experience challenges acquiring a CID diagnosis (e.g., bureaucratic issues, transportation, inconsistent and unavailable physician care), and encounter multidimensional short- and long-term QOL implications associated with CID management. These challenges are compounded further by culturally insensitive care and language barriers in the health system. QOL impacts associated with CID management among adult children ranged from comfort and peace of mind due to increased ability to participate in daily life, while others reported intensified anxiety, stress and depression due to their inability to fully engage in daily life. Although all parents reported heightened stress due to their child's CID diagnosis and new management regimens, parents employed different coping mechanisms that created new short term QOL challenges for their families. The findings suggest that a patient centered approach to CID diagnosis and management, informed by personal experiences, cultural sensitivities and lived experiences of QOL representations are needed to mitigate negative QOL outcomes across a patient's life and deliver appropriate evidence informed care for those in need. • Examines South Asian immigrant children and family CID quality of life (QOL) impacts. • Bureaucratic, linguistic and culturally insensitive systems undermine CID management. • CIDs create multidimensional short and long term positive and negative QOL impacts. • Parent coping mechanisms create new QOL challenges for children and families. • QOL measures should be person centered, culturally sensitive, and reflect lived realities. [ABSTRACT FROM AUTHOR]