Individual and collective transitions: Changes in family information networks over time in life with chronic illness

Chronic illness represents a transition for both patients and their family members although transitions and information behavior changes have largely been explored from an individual perspective. Illness‐related transitions may be undertaken individually or collectively, but little is known about how family information networks change in the face of either transition type. Therefore, we conducted a longitudinal, mixed‐methods study of information networks with 28 families managing HIV or diabetes. Methods included qualitative interviews, surveys, and social network analysis. Findings revealed that transitions were common among study families, with collective transitions more common than individual ones. Network size changed more among families undergoing collective transition versus those with individual or no transitions. Collective transition families experienced slightly more tie strength increases than individual transition families. More families undergoing collective transitions had illness peers in the family network than individual or no‐transition families. Reciprocal information sharing was also more common among illness peers. Findings support a distinction between individual and collective transitions and study of information network changes in each context. Future research should further characterize the drivers and dynamics of collective and individual transitions and related information behavior, while investigating how information systems and services can help.